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I have had CD for 30+ years and there have been a few things that have worked for me.1. Specific Carbohydrate Diet - can work well but it does not work for everyone,2. My period would trigger a flare-up, so I suppressed it, this helped greatly,3. Azathioprine helps suppress the immune system and controls the CD related arthritis,4. Since 2006, I have been using Helminth Therapy and it has kept my CD in remission and has enable me to use less medication to control the CD related arthritis.5.I tend to be low in iron and B vitamins and take supplements to ensure levels are maintained.
I was diagnosed with Crohn's in 1995. All the ups and downs we all experience. Tried yoga, tia chi, meditation, accupuncture, diet changes, asacol, lialda, steroids, neurontin, etc, etc... for the last month, I've been taking Low Dose Naltrexone(LDN). Not easy to get a doc to prescribe it, but I have a great doc who wants patients to have good quality of life. We decided to try it and it feels like it saved me. I also have fibromyalgia which it has helped too. My symptoms aren't completely gone, but I'm symptom free most days and feel like I have a normal life again. Minimal side effects and low cost...$75 for 100 days. Look it up for yourself at www.lowdosenaltrexone.org. Good luck and good health...B
If you are looking for information about Helminth Therapy go to the yahoo group forum for helminth therapy. Under the "Home Page" there are links to the theory, research and news articles. Educate yourself! http://health.groups.yahoo.com/group/helminthictherapy/
I have had Crohn's since the age of 12 and at 42 I discovered Helminth Therapy. I have been SYMPTOM FREE FOR 5 YEARS. I have my life back. I can eat anything and have no more allergies of any kind, my arthritis associated with crohn's is almost gone too.I have had surgery and missing 2/3 of my large intestine but my little pets still work their magic. I have tried every medication available (within my budget) and helminth therapy has done an amazing job and then some. I wish you all the best of health and happiness! TC
Specific Carbohydrate Diet — SCD is the only thing that worked for me. http://www.jcrows.com/carb.html
Re: Specific Carbohydrate Diet — SCD works. Whatever the mechanism is which causes Crohn's, SCD reverses that mechanism. It is now being tested at Rush Memorial Hospital (Chicago) but participants are from around the country as they mail samples throughout the year. Gut flora changes do occur and Crohn's inflamation and symptoms are resolving eating SCD for MANY. There are many online support sites for how to eat SCD. SCD targets the root cause which improves symptoms, medications address symptoms but not the root cause (and biologics are not approved overseas).
Re: Certain foods — Eat SCD (it is good science, now being tested in major teaching hospitals- it combines diet with probiotics) and see how much better you become, and how the inflamation decreases.
Re: Bloating — I discovered doing SCD, that when I eliminated all grains, major bloating went away! Then I discovered that if I eliminated fructose, more bloating went away. Then I discovered that if I graze on only a few nuts, a few times throughout the day, even more of that bloat went away. Bloat is no longer much of a symptom, and I keep letting gutt healing occur, before trying to reintroduce these items into my new SCD diet which is amazing.
Re: Specific Carbohydrate Diet — SCD is the only thing that worked for my son. He was on a lot of bad meds, and he was still having problems. It's not an easy diet but it is well worth it. We saw improvements right away. Sometimes it takes few weeks for improvement.
Re: Specific Carbohydrate Diet — Hi, I have Crohn's Disease for 9 years now. Can someone tell me more about this diet and how effective it can be? I read about it a lot but there's also lots of negative opinions.Please, contact me at firstname.lastname@example.orgThank you!
Re: Specific Carbohydrate Diet — SCD saved my life. I am a big advocate of the diet. I have grown to love cooking my own breads and entire meals.
burton1064Re: Specific Carbohydrate Diet — Here is a link about the diet - http://breakingtheviciouscycle.info/. NOTHING has been more effective for me, not even a double dose of Remicade. Its not easy but I plan to use the diet to be drug free in 1 year. If you are serious about healing, check out the site and buy the book. There are a lot of resources online, I highly suggest joining the email groups if you take on the diet (http://breakingtheviciouscycle.info/support/support.htm)
cd71965Re: Vitamin D — Vitamin D is increasingly prescribed for autoimmune diseases. In my case, supplements (even large doses) don't help much when I'm already flaring (probably because my colon can't absorb it), but otherwise seem to play a role in maintaining remission. When I'm flaring in winter, I go to a tanning salon, believe it or not, and the benefits are immediate. I have always tended to flare during winter (when vitamin D levels are lowest) and since I started drinking a lot of milk, taking Vitamin D supplements, and doing the tanning bed twice a month or so, I've been able to maintain near-remission status with only mild, occasional flares (this after 2 years of constant steriod use and two major hospitalizations). My mother had very severe CD from when she was 21 (living in midwest) until she moved south when she was in her late 40s, at which point she went into remission; since then she has had only very minor flareups. Vitamin D levels are easy to test for; supplements and sunshine are easy to get, so it seems a worthwhile thing for people to try, experiment with, and post their results here.
Re: 6-MP — This gave me lots of warts and wasn't highly effective as a maintenance drug.
Re: Remicade — I haven't tried Remicade, but it has been suggested to me several times. I'd be very interested in how others have responded to it.
Re: Steroids — Prednisone worked very well for me in the short term. However, I've struggled with longer term treatment.
burton1064Re: Steroids — This def works in the short term when nothing else will. Be careful not to take it too much (even when Dr. recommends). I've taken them about 3-4x for 2 years and my vision & bone density have def gotten worse.
burton1064Re: High fiber diet — high SOLUBLE fiber
burton1064Re: Chinese herbs — I tried herbs in the past with marginal improvement, nothing great. I have since gotten herbs from my acupuncturist who practices Classical Chinese Medicine (not traditional) and have seen huge improvements (well worth the expense). If you are in the LA region the acupuncturist is Kia Sinay in Hermosa Beach.
burton1064Re: Fatigue — I felt like this might have been the worst part. I learned to deal with the diarrhea but always being tired sucked the life out of me & my hope that I would get it under control.
DuujoRe: Stress reduction — Stress is the initiator of symptoms I present with; those being inflamed joints.
Reduce stress (usually sorting out what was stressful in the first place is key) and put myself into a totally happy and positive state of mind, plus visualise (and with feeling) the full movement of that joint being normal. That seems to be the trick for my particular (and peculiar(?)) case.
DuujoRe: Iron — I happen to be anemic, too. Related to having Crohns? Not sure, in my case.
DuujoRe: Steroids — Took cortisone for bad flare-ups of inflammation of a body joint that Naprosen didn't fix one time.
Side-effects of short term use are acne and increased heart rate. Side-effects of long term use are not fun at all.
DuujoRe: Naproxen — Used for flare-ups of inflammation of a body joint.
Not a drug for long term.
Was told by a gastroenterologist that side-effects can be that it eats at your stomach lining.
In my personal case, it may have been rather useful as a placebo, as my condition seems to be triggered by strong underlying stress, much more than anything else.
DuujoRe: Joint inflammation — A yellowey fluid gathers around a joint (knee, hip, toe etc) and limits movement of that joint depending on the severity of the inflammation.
Have always just assumed it is related to my Crohns, 'cause though the only other symptom I have is pain in my stomach/gut, they have occurred at the same time on a few occasions.
frogbearRe: Abdominal pain — I have mild/moderate Crohn's but sometimes during flares and also at different points during my cycle, my symptoms become intolerable and my medications almost always need to be tweaked by my specialists. I have a tendency to get recurring cysts on my right ovary as well, which in conjunction with the Crohn's amplifies pain and I'm sure some of the symptoms. I find heat, mint tea, light cardio and yoga, and low residue foods helpful.
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