Does anyone have Crohn's disease?

[jcawork]

I am still doing battle w/ my belly. 4 months and its worse. Some talk of Crohn's.

Would love to get feedback from people who have it.

Thanks,

Jen

[Connie B]

Jen,

Fay A has it, and my son-in-laws mother has it.

FayA may not be able to reply to you right now, but you might wish to put that she has it in the back of your mind for a while until she is better.

[Bill]

I am still doing battle w/ my belly. 4 months and its worse. Some talk of Crohn's.

Would love to get feedback from people who have it.

Thanks,

Jen

Jen :

Are you aware of any clinical trials for tx of Crohn's Disease in your area ? If not, I know of a physician currently recruiting patients with Crohn's disease for testing of an investigational drug. Even though he's not local for you his office may be able to direct you to participating physicians in your area. Here's his info :

David B. Stanton, M.D.

Medical Director

Community Clinical Trials

505 S. Main St., # 1030

Orange, CA 92668

phone : ( 714 ) 835-1719

Good luck.

[Fay]

Jen,

One of our neighbors has crohns. He finds that drinking Aloe vera juice daily, keeps it at bay. Perhaps this is a natural remedy that may help you?

Faylene

[kamataca]

Jen,

My mom has dealt with it for almost 30 years now. She was one of the "first" in our area diagnosed, and was everyone's guinnea pig for many years. We still have her here, so we don't complain too much. After several resectionings, she just left her illeosotomy in place, and has done much better.

We just have to watch her, as the Tarceva caused 'tummy troubles' (complicated by the Crohn's) and caused her to dehydrate and she ended up hospitalized.

Crohn's has never stopped her, and so far she's brought that fighting spirit to her NSCLC as well.

Kelly

[Hebbie]

I met a young girl (21 years old) with Crohn's disease when I attended The Kushi Macrobiotic Institute back in May. They apparently have great sucess in treating/controlling Crohn's with a Macrobiotic diet. They put her in touch with a woman named Virginia Harper who was able to cure/control her Crohn's through macrobiotics.

She has written a book about it -- here is the link:

http://www.mental-health-matters.com/bo ... 1575668319

Don't know if this will help you or not, but figured it was worth mentioning!

[Fay A.]

Jen,

I'm dealing with a bad flare of my Crohn's disease. I know you were asking about meds, etc. in late August while I was still in hospital recovering from the botched FNA Biopsy. My doc has put me on the following meds.Here's to hoping they put the Crohn's back into remission for awhile. I'm ready to try just about anything. I can't completely heal from the Lung Surgery if I don't have adequate nutrition. But I am a bit worried about the high dose steroids and the immune suppressor. If there are any free floating cancer cells in me or residual Coccidioidomycosis I'm going to be in a world of hurt.

Here are the drugs : Entocort-EC, Azathioprine, and Ciprofloxacin.

Hope the information is helpful.

[ellakc2]

My daughter who is 33 has Crohn's. Microbiotic diet works well. Eat organic foods. Get to a Gastro Dr.

If and when it flares up the pain can be awlful.

Nothing to mess around with. Good luck and take care.

Mare

[eppie]

I have CD. It is on the colon and I have never had to go on Prednisone. Which is very good. Do you thikn there is a connectin between LC and CD? MY dad has the LC. I have CD. My Uncle has ITP and my aunt had MHLymphoma. My grandmother had RA and her sister had Lupus. How far can this list go on? Add Heart diesase and Diabetes and Glaucoma to the genetic mix and statistically we're all doomed.

I for one will not tolerate any talk of that nature.

Be healthy everyone and do healthy things. Work out eat right, love right and be right always.

Hugs for all

eppie

[Fay A.]

To answer your question, Eppie,

Yes...I know there is a link between Lung Cancer, Crohn's Disease, Lymphoma, Lupus, and RA. But what is more important, so do those qualified professionals who are researching the link between autoimmune disorders and cancer. There are some recent articles coming out on a suspected link between H.Pylori and Lung Cancer.

I'm afraid you may have misuderstood what I wrote. Those of us who have Lung Cancer and Crohn's depending upon the severity of the Crohn's Disease may find ourselves in the position of having to make the decision to treat one disease with a medication that is contraindicated for the other. Anything that wipes out the immune system is an issue for a cancer patient. And the drugs used to treat severe Crohn's are serious immune suppressants. One of the drugs I've just started is actually a drug given to transplant patients to hold off organ rejection. It has shown itself to be effective in healing the ulcers found in severe Crohn's Disease (the kind of Crohn's that causes bleeding severe enough to warrant a transfusion, the kind that interferes with nutrition because there are too many lesions and not enough normal small bowel to properly digest the food you've eaten.).

I do eat well...I just don't digest it. And that interferes with my ability to heal from my latest cancer surgery. I wrote what I wrote so that anyone else facing a similar situation (and there are quite a few of us who have Lung Cancer and Crohn's)will have the information available to them to help them make an informed decision.

I appreciate your fighting spirit, Eppie, and I sincerely hope that your CD never progresses so that you have to take these toxic medications. (There is a debate in the medical community right now over the cause of Lymphoma in Crohn's patients. Is it the meds that cause the very high Lymphoma rates in CD patients or is it that CD patients just develop Lymphoma at much higher rates?) It's a question of choosing lesser of evils with the hopes that I'll be able to live a while longer.