Recommended reading? (original) (raw)

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esjay posting in almond_flour

Recommended reading?	Oct. 9th, 2006 @ 04:53 am

Does anyone know if there are any other books that are about the experience of dealing with Ulcerative Colitis besides "Colitis & Me: A Story of Recovery" by Raman Prasad?

That book, by the way, is an excellent read. I've read it three times and reread a few of the chapters when I'm feeling like I'm losing the battle with UC. In my opinion, its an inspiration to keep going. To keep pushing on even when SCD feels like its too difficult to do.

I want to find more biographical ones like that.

	From:shiromaguroDate:October 9th, 2006 07:12 am (UTC) (Link)

I have UC as well. how did the SCD work for you? I've been considering it as my last ditch natural effort before giving in and taking 6mp.

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	From:esjayDate:October 9th, 2006 01:55 pm (UTC) (Link)

I've been on SCD for two years. I had a major flare up because I stopped taking my meds (Colazal) on my own, thinking that the diet would be enough to keep me in remission. So I had to start the diet all over again but with this second attempt, I am continuing to take my meds. I'm still far from normal, but at least most of the symptoms are gone.

In those two years of glory[?] I only had a minor flare up (high fever/blood). But I think it must've been something that I ate that triggered it. I went back to the starter diet for 2-3 weeks, and it gradually went away on its own.

Other than that one time, I haven't had any gas, abdominal pain, diarrhea, bloody stools in months.

I feel like I have a long way to go because some days I feel overall lousy and weak. I haven't been able to gain back the 15 lbs that I lost. I still run to the bathroom 2-6 times a day, but that certainly is an improvement from the beginning when I would be running to a bathroom 15 times a day in extreme urgency.

I'm still giving SCD a chance because I've had my medication switched so many times over the 2 1/2 years I have been diagnosed with this. At times I feel that the side effects from my medication are worse than the UC symptoms. It makes me reluctant to try new drugs (plus its bad enough that I can't really afford my meds as is).

If you are considering SCD, you should try it out for a month. When I first started, I already noticed a huge difference in two weeks. Its not easy to do, there are so many times where I would give anything to be able to eat pizza again (SCD pizza comes close, but tastes nothing like regular pizza). The longer you are on it, the easier it gets.

Hope that helps.

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	From:shiromaguroDate:October 9th, 2006 04:27 pm (UTC) (Link)

thanks for all of this. what meds are you on or have you tried? so far I've only done asecol and prednisone, but they're trying to stick me on 6mp, which kind of freaks me out...

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	From:esjayDate:October 9th, 2006 05:00 pm (UTC) (Link)

I used to be on asacol as a maintenance drug, but then I had to switch to Colazal (which is the only drug I am currently on)

During my first two major flare-ups I had a cocktail of different pills including prednisone, flagyl, potassium pills, and some other antibiotics (I can't remember the names) all at the same time.

They wanted to try me on Remicade infusions after my minor flare-up, but luckily most of my symptoms went away and it wasn't necessary anymore. I've been managing my UC through diet, exercise, and Colazal ever since.

I hear you on the 6mp hesitation. I was reading up on different medications for UC and that one looks very powerful. I guess you should talk to your doctor about how you want to manage your symptoms. Best of luck!!

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	From:shiromaguroDate:October 11th, 2006 06:33 am (UTC) (Link)

colazal made me break out in tiny blisters (dishydrotic excema) on my hands, so I'm back on asecol. I'm still trying to get off the prednisone, so my doctor's pushing 6mp. I've talked with my doctor a ton, but now I'm trying to learn about other people's experiences with different drugs.

thanks!! :)

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	From:sabonaiDate:October 9th, 2006 12:25 pm (UTC) (Link)

This seems really obvious but have you read Breaking the Vicious Cycle?

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	From:esjayDate:October 9th, 2006 01:25 pm (UTC) (Link)

Yep :)

I like that one, but it seems more like a reference book to me.

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