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TOPIC TITLE: unusual presentation of crohns
Created On 3/13/05 2:33 PM
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aviesq
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Joined: Mar 2005

3/13/05 2:33 PM
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several months ago i was diagnosed with crohn's of the small intestine. the doctor said that i have it closer to the stomach than to the colon and that this is the first time he has seen this in his patients and that it's an unusual locatino for crohn's to develop. because of it's location, the pain i experience is probably different that it is with patients with more traditional crohn's.

on top of all that, my mother passed away after suffering from a brain tumor for 11 months. she died 2/27/05 so this is all very recent. the stress is probably contributing to the pain. my doctor believe that the increased acid production is causing the increased and more intense pain because of the proximity of the crohn's disease to my stomach. i was already on nexium to reduce acid production but he has advised me to increase the dose from one time per day to twice daily.

i saw in another thread that some people are on a special diet for crohn's. can anyone tell me more about this. so far my doctor hasn't mentioned anything about a diet change, though the other day he suggested i take lactaid pills just to see if they do anything for me. however, i doubt that i am lactose intolerant.

any and all information will be appreciated. thank you.
 
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member
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3/13/05 5:10 PM
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I am very sorry about the loss of your mother - that must be very hard to cope with on top of your recent diagnosis, and constant physical pain. May you be comforted among the mourners of Tzion.

You may want to read the book Breaking the Vicious Cycle, by Elaine Gottschall - it is a strict diet for Crohn's and any other IBD related diseases. I don't have any experience with it - Baruch Hashem I have been in remission for over a year - but I know people who "swear " by the diet. It is very strict, and there are specific recipies...(look on the topic of diet, someone mentions a kosher place to order some of the ingredients from somewhere in new york.) As far as diet goes , one thing is for certain, every case of Crohn's is very specific and different for each person. As such, it is up to the person to decide which foods are tolerable and which are not. Some are sensitive to dairy and others to fiber. Its up to you to figure it out with trial and error. For a few weeks record what you eat and your symptoms, see if you can tell which foods are linked to your symptoms. HTen chose one food to eliminate for a few days to see if your symptoms change. If they don't that food probably isn't causes your symptoms but if your symptoms ease up you may want to think about avoiding that type of food. Remember do one food at a time so you know which food makes a difference. (Some people find that avoiding greasy, spicy, foods with lots of fiber, and dairy are trigger foods.) Every doctor has a different idea about how diet is related to Crohn;s although most will tell you that while foods don't cause a flareup they may exacerbate it. The important thing is to be your own advocate; talk to your doctor about what you are planning to do and see if he/she has any information for you to look up.

The crohn's and colitis foundation website is excellent and full of information, recipies, resesarch, latest news etc... (www.ccfa.org) I highly recommend that you join as a member to receive their magazine for "chizuk" and it helps to know there are others out there.

Lastly, stress definately plays a role in Crohn's . For me, my biggest flareup occured during a stressful time in my life - and going through a flareup itself is stressful which doesn't help matters......

Hang in there. While we each have our own symptoms and problems, we all know where you're coming from. Read up, talk to your doctor (make sure you have one that you feel comfortable talking to , one that is approachable at any time, and one who you can trust), and daven!!!! Feel good, hope this information helps a little!!!
 
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specialmom
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3/16/05 9:39 AM
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My son presented with Crohn's in the jejunum (second section of small bowel), but he also has eosinophilic enteropathy, so the best option for him for treatment has always been elemental diet (elemental formulas--Neocate or EleCare). I do know that research has shown that Crohn's completely remits in patients on elemental formula exclusively. The problem is that the formulas are so unpalatable that in patients who don't have a gtube it is almost impossible to make yourself drink adequate amounts for proper nutrition. Since there is no other option for our child, I don't know about other altered dietary choices for Crohn's, but if your disease is in a particularly bad flare elemental diet for a short period could help.

Be well.


-------------------------
mom to 5 bli ayin hara, with issues including eos enteropathy, bipolar, ACC/SID, LD, dev delay, gtube, etc
 
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