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Posts: 91
Joined: Dec 2004

4/20/05 3:49 PM

Have a great yomtov everyone, enjoy whatever you can eat and drink!

Ray

Edited: 1/11/07 at 5:06 PM by Ray

4/21/05 5:11 PM

This is my son's first Pesach with Crohn's and I daven that we will get by without a flair up. WE will not be at home and he just had his fourth remicade infusion. B"H he is doing much!!!!!better. Thank you Hakadosh Baruch Hu!
I wish all of you a Chag Kasher V'Sameach and an easy yomtov (Crohn's wise).
Miriam

4/21/05 5:21 PM

BH613,

I hope ur son doesn't have a flair up either, I'm on remicade too, it really helps!!
have a wonderful Pesach.

DevorahLeah
Junior Supporter

Posts: 2
Joined: Apr 2005

4/27/05 5:28 PM

Hi! I'm new here so please excuse any stupid questions.
I am 23, and am expecting my second child this summer. I was diagnosed with Ulcertive Coloits about 2 years ago after suffering for almost ten years. I was perscribed Asacol, seems to help, but could be much better, recently my dr. added Mercaptopurine, and the number of Asacols I take daily keeps changing, now I'm on 8 tabs, I'm scared to tell him that it's not that great, cause he'll just up it to 10! Diet doesn't really seem to help, I was off dairy for a while, off spicy foods (which I think does help).
what's this about Remicade? How does it work? I never heard of it.
I'm thinking of finding a new dr. should I?

Posts: 91
Joined: Dec 2004

5/2/05 2:57 PM

FEEL GOOD Everyone!

Edited: 1/11/07 at 5:06 PM by Ray

5/3/05 2:50 PM

Hello! B"H our first Pesach with Crohn's (my son's) went fairly well. He did flare up slightly from the matzoh, but having had his infusion of remicade right before yomtov helped!!! He is not on a diet, except to drink lactaid free milk and reduced dairy diet along with no fried foods, no nuts or corn, and no whole wheat breads.
Feel Good,
Miriam

5/4/05 1:14 PM

I"m happy that the remicade helps!
i hope he continues to feel better

5/16/05 9:20 PM

dear devorah leah -
first of all besha'ah tova!!!
I am also 23 -although single and with crohn's...one thing that i know for sure is that you must be honest with your doctors -even if it means increasing your dose of asacol! (I take pentasa/mesalamine which is in the same class of drug as asacol, and at one point I was taking 16 a day along with other medications -so it could always be worse!)
It'svery importatnt to have an open, honest and trusting relationship with your doctor - if that means finding one you can trust better an feel more copmfortable with, so be it however you might want to wait until your "flareup" - is there such a thing with UC?- is over before switching to a new doctor.
Also, I have been told that it's worse to have a flareup while being pregnant than taking medications to control it...this may be different with UC than Crohn's- but still, I think you should tell your doctor of your symptoms and get your UC under control - especially being pregnant!
hatzlacha rabbah -and feel good!!!

hang in there...

5/16/05 9:26 PM

Also , here's what I know about remicade: its an IV infusion of a drug that is suposed to be a "quick fix" although it's temporary. You must really find out more about this before deciding because a lot of people have negative reactions to it. Also once you use it , I thinkk it's harder to keep further flareups under control without it....look it up online under medical websites (medline, ccfa), talk to your doctor, then make an educated decision...it always helps to come to your doctor with some knowledge regarding the issue before you discuss it so you have a better understanding of the issue.

5/17/05 12:00 PM

Member,

are u on a diet for crohns or your just on meds?

Ray

Edited: 1/11/07 at 5:07 PM by Ray

DevorahLeah
Junior Supporter

Posts: 2
Joined: Apr 2005

5/17/05 11:13 PM

Thanks Member;
wow, 16, that's alot. B"H things are better now, though they could still be much better.
Is Remicade for UC too, or only for Chron's? (though I probably wouldn't want it, I wasn't even going to go to a Dr. I wouldv'e preffered trying Homeopathic remedies, but whatever). And yes, there are flare-ups and all in UC as well.

Ray;
Where's the diet on digestivewelness, I looked for it, all it's telling me is to buy their products. Is that what it means to follow their diet? Just to buy from them? I thought it was like ideas and recipes.

5/18/05 10:59 AM

Devorah Leah,

Ray

Edited: 1/11/07 at 5:08 PM by Ray

5/21/05 11:38 PM

Ray: as of now I am only on meds and maintaining very well b"h without any specific diet. in dec of '03 I had surgery and since then I have been symptom free B"H Bli ayin harah!!! So now I guess I wait out for my next flare to start experimenting with the diet. For me I never really had a speific diet because my case was so severe that within a year of my diagnosis I had the surgery, so it's all guesswork from here on in...

devorah leah: I am happy to hear that things are better for you bh - as far as remicade for UC I have no idea. It's best to ask a medical proffesssional. Also are you a member of the crohn's and colitis foudnation of america (CCFA)? If not, you (and anyone else reading this) should really consider it. It's an anual fee - reasonable one- that gives you a subscription to their magazine which has a wealth of information, contacts and references. For example the altest one gives a list of websites that are reputable to look up medical issues on (www.webmd.com, www.health.nih.gov, www.fda.gov, www.pdrhealth.com, www.hon.ch/HONcode/Conduct.html) Also check out www.ccfa.org

Do you currently see a homeopathic doctor? or was your message implying that you see a regualr medical doctor now and would like to see a homeopathic one? I am curious as to the homeopathic approach. I have also heard of a man in Israel ( i am not sure if he is a doctor, rabbi or mekubal or a combination of them) but he deals with crohn's and i think also UC - supposedly the people who see him don't have to take meds anymore. IF ANYONE IS INTERESTED in this I believe he is coming to the NY area soon - I know someone who is going and can try to get more info...

5/24/05 12:43 PM

Member,

What meds are u on?
good luck and feel good.

Ray

Edited: 1/11/07 at 5:09 PM by Ray

5/30/05 8:28 PM

Ray - yes I have heard that about the diet - it makes sense..I have not seen that website yet although I will try it. I dont know if its the same as the diet from the book breaking the vicious cycle? as for meds I am on 6mp (purenithol) and pentasa. I also take lactobacillus.

Posts: 154
Joined: Jun 2005

5/31/05 11:06 AM

Member -

Good luck, feel good!!

Ray

Edited: 1/11/07 at 5:10 PM by Ray

6/2/05 9:10 PM

Does anyone have a suggestion for someone who has ulcerative colitis and is allergic to nuts? Also nut flour tends to be very expensive especially if one does not live in the U.S.

-------------------------
Daven to Hashem - He always listens to you!

6/2/05 11:18 PM

Ray - I have read parts of the book...before my surgery when my flare was really bad and I was willing to try anything. Since my surgery I had forgotten about it because I have had no symptoms bli ayin harah. Now I will look into it again because it would be nice to push off any new flares as long as possible.
For some reason I can't access the website...can you please write out the address?

I am happy to hear that you are feeling well b'h - any small progress is motivation to continue! keep it up!!

-member

6/3/05 10:45 AM

Member -

the website is digestivewellness.com

Ray

Edited: 1/11/07 at 5:10 PM by Ray

Posts: 28
Joined: Jun 2005

Stars N Sky
Supporter

6/8/05 10:51 AM

Hello everyone ,
I am new to this site and i wish everyone a refuah shelaima. Can anyonoe tell me the diffirence between Chrons and Ulcerative Colitis?

Thank you.