Crohn's Disease
 

I don't see a thread on Crohn's so I thought I'd start one..or a current one if someone already has in the past..I've had it since December of 2010. So far kinda been going through cramping today..but my last colonscopy showed it was in remission...2nd day ive been totally off prednisone and plan to keep it that way..as that stuff has nasty side effects. what meds do you use to keep your IBD or Crohn's under control? I've also considered medical marijuana..though I don't have a card to obtain 'cause its federally illegal anyway..but I can't lie I did use it before and I think it's definitely a contender to help..it really helped me even long after the effects wear off..I was amazed.

I'm from Japan but have lived here in the USA for the majority of my life. So my english is just as good as any other Americans..been here 15 years. And in Japan, Police would keep an eye on you if you so much as even mention the word "marijuana" here in the US I like how people are more open to it...

:( today is the worst flare-up to date. So much for having a good 4th of July sometimes the pain hurts so bad I'll cry :,(

What treatments are you on, or lifestyle changes have you made, to help with the Crohn's, Tomo?

My son started out on medications when he was first diagnosed, but he did not like their side effects and so he began to research diet, supplements and other more natural treatments and has found it highly helpful in controlling Crohn's flare-ups.

His focus is primarily to reduce inflammation and make sure the good microbes outnumber any bad ones in his GIT

As I mentioned in your introduction on New Members Forum, keeping stress to as low a level as possible is also essential to his treatment protocol.

He has also learned that not all people with Crohn's can eat the same foods...what some say helps them may not help another person with Crohn's...all dependent on those unique factors in the individual, especially any co-morbid illness or disorders, as well as things like allergies, etc.

Have you ever read the book by Jordan Rubin called The Maker's Diet.
Although my son does not follow the specific diet recommended there, for the reasons I mentioned above re individuals, yet we learned a lot from Jordan's own experience of very severe Crohn's, now in remission for a number of years. (I do think Rubin has become a bit too commercialized :rolleyes: but his experience is worth reading, and then glean what you need from the recommendations. His supplements are supposedly very good too, Garden of Life, but IMHO very expensive.)

My son has not had Crohn's pain in a long time, but he has to be very disciplined on what he consumes and does!

I dont mean to cuss and swear but this Crohn's Disease is driving me ****in' nuts! Ever since I ween off prednisone I've had off and on fevers and constant body ache similar to how the flu is..my doctor said people can go through a "crash" period when coming off of it..I tapered as slow as I could..I refuse to go back on that drug no matter what the doctor say.

Medical Marijuana is able to bring the fever down..(surprise!) and I am able to finally sleep. Our state initiative one again failed for it's second year in a row to make it on state ballot's for voting and decriminalizing. There is another group that is sponsored by Law Enforcement and the State Liquor Control Board and other cannabis groups are not happy about it. I myself, don't care to be honest.

Law Enforcement would allow..along with the Control Board would decriminalize it, sell it in state appointed liquor stores for persons age 21 and older, up to an ounce at a time..which I think is more than enough and quite fair. While others are simply angry and state and local government having control over Marijuana..I hate to tell them but no matter what, they're going to get their piece of the Bud too..no pun intended...

Are you in Washington State or Washington D.C.? I live in WA State and I am a medical marijuana user. My gastroenterologist is my recommending doctor. MMJ has been legal in WA since 1998. Of course, that does not mean it is a simple matter to obtain your meds, and lately everyone everywhere has been going bonkers over the Feds.

I developed Crohn's after having my entire colon and rectum removed and my J-pouch constructed. My takedown was postponed about 6 months while I underwent three Remicade infusions, which worked to close some fistuals developing in my new ileal pouch! I now have a working j-pouch, but I suffer spasms of the inner sphincter, and fissures. I have also developed inflammation of the spine, which my neurologist is calling transverse myelitis. And if that were not enough, I have episcleritis (inflammation of the outer layer of the eye) and other eye issues. Arg-g-g-g-h! :eek:

Life couldn't be more fun (sarcasm) and I have days I wish my body would stop this war with itself. I take Pentasa, but have tapered to only 1000mg/day (down from 4000), loperamide, norco (pain), ativan (pain and spasms) and I use an ointment compounded of lidocaine and diltiazem when I manually dilate my stricture. I also use two or three different probiotic products, including VSL-#3.

Over the last 8-9 years I have found that I have to eliminate things from my diet that never caused me problems before: chocolate (irritates the bum), whole grains, foods with lots of residue or fiber, berries with tiny seeds, nuts, raw veggies, and foods with whole spices in them. I do eat a rotating diet of poultry, fish, red meat (including bison) and pasta. All my veggies have to be well steamed. I don't drink alcohol, and rarely drink soda. Right now I am even on more restrictive a diet as I am babying two hernias, trying to put off what will be a very touchy surgery, due to the immense build-up of scar tissue and adhesions in my gut.

Many of the meds I have been prescribed you can take away . . . but don't touch my medical marijuana. It works without fail to, at the very least, relax me. And since so much of what I suffer is spasm related, that is important!

I wish you well. If you can learn to manage your Crohn's, and to listen to your body and not to the tons of advice others will have for you based on their own experience, or their cousin's, or best friend's, you will be better off.

All autoimmune disease is the result of molecular mimicry. Non-self proteins mimic self proteins. The body attacks the non-self proteins, and attacks all the tissue it compromises. The trick is identifying the non-self proteins and eliminating them.

Chron's disease has an extremely strong correlation with ingestion of 1) sugar, and 2) grassy grains (wheat, barley, rye and oats). The sugar grows microorganisms. The body recognizes the microorganisms by certain protein signatures. Some bodies recognize some proteins, other bodies recognize other proteins.

The body attacks the microorganism and the affected tissue based on the protein signature. When we ingest proteins which express the same signatures, it sets up the same response.
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I was diagnosed with Crohn's Disease back in the mid-'90s. I had all the symptoms: bloody diarrhea (eventually up to 2 oz. blood/day), bloating, cramps that doubled me over, going to the bathroom 20+ times a day, joint aches, nausea... the works. The gastroenterologist put me on asacol, which only exacerbated my symptoms. Each time I reported this, he increased my dosage (total of 3x). At the worst, I had lost 80 lbs. At this point, he wanted to admit me to the hospital, put me on pred, and cut out 1/3 of my bowel.

It was at this point that I put my foot down and refused any further treatment from this guy and got REAL proactive. We got online and started doing our own research and networking with other Crohn's patients and support groups. One thing we discovered is that just about every treatment for Crohn's only works on about 10% of patients, which is one reason why there are so many drugs and treatments for this disease. One of the treatments we found (that the gastroenterologist had never heard of despite its being around for decades and having an excellent proven track record) was the Specific Carbohydrate Diet (SCD). We ordered 20 lbs. of almond flour (a staple in the early stages of the SCD) from CA, and I began following this diet religiously. Within 3 weeks, there was a 50% improvement in my symptoms. Within a year, my Crohn's had gone into complete remission, and has not returned since (except that I have some residual IBS, so I do have to be careful of a few things I eat, and I can no longer tolerate most NSAIDs without risking rectal bleeding). Other than that, I have been able to discontinue the SCD entirely (gradually phasing other foods back into my diet). I can eat all the things they told me I would never be able to eat again - salads, nuts, seeds, spicy stuff... all without any problems.

The SCD is not a panacea for IBD. From what I learned then and since, the SCD, like other therapies, works on about 10% of patients who try it. I don't know if this is inherent to the diet itself or due to the fact that it is very difficult to strictly adhere to - which is essential. The diet also has its detractors, so do your homework and come to your own conclusions/decisions, and by all means talk it over with your doctors. What I do know is that it can be done in conjunction with whatever meds patients are currently prescribed/taking, it has and does work for Crohn's, UC, and IBS, and it can't hurt to try it (barring any food allergies/sensitivities).

For more info, google: specific carbohydrate diet and/or see:
http://en.wikipedia.org/wiki/Specific_Carbohydrate_Diet
http://www.scdiet.org/

Doc

I'm an autoimmune mess, unfortunately, so what helps one thing can stir up something else. Case in point -- I have Crohn's Disease and spondylitis in my spine. The treatment that helped a lot was Remicade. For a while, I felt so much better.

BUT I started having kidney problems and protein in my urine. Remicade triggered my Lupus badly and I had to stop taking the infusions. Now I take Entocort EC for the Crohn's. It does help and it doesn't have nearly the side effects that prednisone does but it's not as good as Remicade for me.