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FORUMS > Crohn's Disease / Ulcerative Colitis
Replying to Topic: Newly Diagnosed with UC
Created On 1/22/08 6:01 AM by PB613


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PB613
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1/22/08 6:01 AM
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Ive been newly diagnosed with Ulcerative Colitis. Its been about 1 year. Baruch Hashem, it's healed (I hate using the word remission), with a few medications in the beginning and now down to one medication a few times a day...
I'm in my 20's and in the "parsha", I'm interested in corresponding with people who have been through this and how it affects/ed them - Namely with other girls or women.

Looking forward to hearing from you!


You can respond to this post or PM.


Kol tuv,
PB613

 
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Edith
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1/23/08 10:21 AM
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what medications are you taking?
Have you heard of the specific carbohydtrate diet? alot of people have success with it - especially if they start it quickly after being diagnosed. (personally, it did not help me, but i know of others who it works for)
 
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PB613
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1/29/08 5:50 PM
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Thanks for your reply!
Originally started treatment with mega Asacol (12 a day) and mega steroids for 6 weeks then decreased very gradually. As i was decreasing, i developed Erythema Nodosum - a rash on the front of the legs, below the knee. It was a majorly weird reaction. They were big red bumps, hot to the touch, and grew by the day (looked like blown up mosquito bites) and they throbbed. I wondered if the boils in mitzrayim were like that. Through research, I learned that it's associated with sulfa-related drugs as well as IBD - hmmm....and is treated with Anti-inflammatories...well, was using that anyway so when i began 6MP, (which works similiarly to Prednisone but without alot of the side effects) they slowly faded, BH. My GI was so excited abt the rash bec. he said he hadnt seen it in 20 years! My friend in a medical field wanted to bring me in for show-and-tell bec they had just learned about it. I was open to going, though BH they began fading when she proposed the idea, so it was too late....
On 6MP for 6 months...decreased and ended.
Currently taking Asacol - 4 in the morning and 4 in the evening - for 'maintenance Therapy.'

BH, i feel gr8 and am back to normal. I AM SO GRATEFUL TO HASHEM FOR SENDING A REFUAH through the dr's and meds...ITS UNBELEIVABLE..!!!
I found (through dr's and alot of my own research - online, journals, speaking to many people in the medical field) that Asacol is a very low risk medication, without any major side effects on the person taking it, on fertility etc. Thats nice to hear, but nevertheless, i dont want to be on it for ages because it is still a medication and it is still a chemical - and not natural - and i dont want to take science's word for it.

so i have been looking into alternative therapies..

I have heard of the SCD and even found the site Digestivewellness.com run by Rachel Weiss. I looked into the book "breaking the vicious cycle" and read through online support groups of people who are doing it.

My only hesitation about doing the SCD -
2. You mentioned that starting it soon after being diagnosed has been found to be helpful....is this anecdotal or is it proven?

3. i have read that it works for some people and not for others - if this is the case, i am worried about having a relapse while trying out the diet.


thanks again,
P


Edited: 2/14/08 at 3:12 AM by PB613
 
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tomidbsimcha
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2/22/08 8:59 AM
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I had uc for about three years as a bochar. I spent about three weeks in the hospital. Took asacol, prednisone, 6mp, cyclosplorine etc etc. I tried the diet for 2-3 months. It didnt really help much, but nor did the meds. I took the plunge and had surgery just before i turned 21 (wanted to be healthy before i started shidduchim). B'H im know 4years later and healthy as ever.
I cannot say that the shidduchim process was easy but everything worked out wonderfully!!!
 
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Edith
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2/22/08 11:05 AM
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do you have a bag now, or did you do the j-pouch
 
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PB613
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2/22/08 3:03 PM
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Wow- Thats amazin, good news, im happy to hear that the surgery worked for you!


Edited: 2/24/08 at 2:43 AM by PB613
 
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tomidbsimcha
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2/24/08 4:52 PM
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I have a j-pouch all in 1 surgery
 
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