Anybody with Information About Crohn's Disease

Updated on April 08, 2008
K.P. asks from Chico, CA
8 answers

I am a mom of a beautiful (14 at the time)15 year old daughter who was diagnosed with Crohn's disease in Sept. 2007. As with any life altering experience we are trying to gather all the information we can of what we can do, shouldn't do, etc.

For those that don't know of this disease it is an autoimmune system disease that attacks the digestive tract anywhere from mouth to rectom. Depending on your severity it can be just uncomfortable to painful and you use diet and meds to control.

At this time they have no cure and it is a life long sentence.

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So What Happened?

thank you for your imput, I have apreciated it. I will keep you posted. As you know it will be a long process before we get answers.

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C.L.

answers from Fresno on

I don't know a lot about the disease, but I have a friend that has it and she had a baby about a year ago with no complications. The only thing she couldn't do was breastfeed, because the medicine might be harmful to the baby. She is married and lives a normal life.

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K.F.

answers from Sacramento on

Hi I am a mother that has crohn's disease. I was diagnosed when I was 18. For more information go the the crohn's and colitis website ccfa.org. Also if you are interested there is a crohn's symposium this weekend in Sacramento. You should be able to get more info on the website. If not please contact me at ____@____.com I can tell you from my experience is that everyones disease is not the same what works for one person my not work for another. So you will learn what you can and work with your doctor to find what help to keep the crohn's as they say in remission. The best to your daughter and your family.

1 mom found this helpful
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K.M.

answers from Redding on

Hi - I just joined Mamasource today and was perusing the request section. At first, I thought, well, these questions don't really apply to me as my daughters are college age, but then I saw your request and realized that I have a wonderful website that could definitely help you. I have had ulcerative colitis for 16 years and went through all the western medicine routine at first and got basically no help at all. Then I found acupuncture and this website -www. helpforibs.com and I have been symptom free for many years. If I can be of any help, you can e-mail me at ____@____.com.
Blessings to you and your family,
K.

1 mom found this helpful
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A.K.

answers from San Francisco on

A good friend of mine was diagnosed with Crohn’s after her daughter was born. She was misdiagnosed several times so it was a long painful process for her to get it under control. What I’ve learned from her is that controlling her diet is a major part of the process. Once she started managing her diet properly her condition improved and she now has a very normal, nearly symptom free life. I don’t know if the diet she’s on is a “standard” one for Crohn’s patients or if it’s more of a custom thing. I do know that her main source of protein is chicken. She eats very few carbohydrates and when she does it’s usually pasta or rice. Her vegetables always have to be cooked well rather than al dente and she never eats anything in the cabbage family or any processed foods.

I hope this helps and I hope that your daughter quickly gets it under control so that she feels better

Good Luck
Alli

1 mom found this helpful
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C.I.

answers from Stockton on

I K., I don't have Crohn's diease but I know several people who do have the diease. I gather from them it's not a great illness or not illness for that matter but, it's liveable so continue to do your reseaarch as I will for you and find things that are tolerable for her it might means a lot of life style changes for the entire family which is liveable as well.

I too have kids that have illnesses and it can be pretty tiring but by the grace of God we survive. The support of your wonderful husband is what you need and will continue to need. I will begin my research and will follow up with you but remember you can never read to much and you can never have enough knowledge. God is good so lets get to moving.

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B.G.

answers from Sacramento on

Hi K.-
I just wanted to give you a little bit of hope... My husband, now 26, was diagnosed with Crohn's disease at the age of 9. He spent time in the hospital and underwent steroid treatment, which I now think is avoided... but since about 11 he has had no further symptoms and lives a completely normal life.
Now I am not well educated in subject, and don't know if my husband was given a misdiagnosis so long ago, but I just wanted to give some hope that is not always a "life sentence".
Good luck, I wish your family the best.

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M.S.

answers from Sacramento on

Hello, my adult sister has Crohn's disease. Well, you need to really watch her diet. I recommend trying a gluten cassein free (wheat free) diet for a couple of weeks to see if that helps ease symptoms. Crohn's is also aggrivated by stress, so starting a yoga regimen would be helpful, especially the breathing awareness. Taking proper deep breaths from the abdomen (rather than shallow - from the chest) is equivalent to givin your internal organs a massage.

Blessings.

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A.P.

answers from Sacramento on

There is a company called biocure that makes a supplement called ovamed (also known as TSO). It's milky and drinkable.

Are you ready for this? It's a suspension of pig whipworm eggs that your child would have to take every 3 weeks or so.

The eggs hatch, but they are the wrong kind of whipworm for humans, so they don't survive very long. They trigger the immune response but, and this is important, they do not trigger the AUTOimmune response. Very key.

This regimen is treating ulcerative colitis and crohn's disease in Europe (the company is German), has been used regularly by many people since 2004, and was in clinical trials in the USA last time I checked up on it. The FDA has not approved it yet for use in the USA, but it might be worth a trip to Germany to try it out!

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