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Posted 6/28/2012 7:53 PM (GMT 0)
My first post here - Wanted to start with the Thanks!

Been reading this forum from past few weeks and learned a lot. My Heartfelt Thanks to the Founder, Admins, Moderators, and Members of this wonderful forum.

Thank You All!
Posted 6/28/2012 7:58 PM (GMT 0)
Welcome to the forum!!
Posted 6/28/2012 8:17 PM (GMT 0)
Brief History:

Symptoms started in 2004; DXed with left sided UC in 2005 and PanColitis in 2011.

Medication:
Asacol - until 2011; Colazal - for few months in 2011; Prednisone - now and then from 2011;
Currently - Sulfasalazine; Budesonide; Mesalamine and Entocort enema as needed.
Posted 6/29/2012 1:07 AM (GMT 0)
Wonderful to have you here but very sorry you're dealing with UC. If you have any questions, feel free to ask :)

Thank you for joining us.
Posted 6/29/2012 2:56 AM (GMT 0)
Yes, welcome RayOfHope. How are the meds working for you? Have you found any help through diet or supplements?
Posted 6/29/2012 5:38 PM (GMT 0)
Thanks Michelejc, notsosicklygirl, and stereofidelic89 for the warm welcome.
Posted 6/29/2012 5:40 PM (GMT 0)
My experience with UC:

Symptoms started in 2004 with traces of blood, and then increased frequency of BMs and diarrhea. DXed with left sided UC in 2005. GI prescribed Asacol, informed me that it is chronic disease with no cure, and asked me to look online for further information.

In 2006, I have started with Vitamin-E enema protocol by Sheldon. That was the first time I saw improvement in my symptoms. After few months on this diet of boiled vegetables, chicken, yogurt and brown rice, coupled with Vit E enema and the supplements, I was in remission (more or less). It was very tough to be on this bland diet for long - I started adding more foods and also stopped eating chicken (as I am always conscious to eat meat). Also, three major events happened within a year after mid of 2008 – getting married to my wonderful GF, losing my Dad, and being blessed with a Son. My symptoms started getting worse, I was in flare-up, GI tried Colazal for few months which did not help, and Colonoscopy in 2011 revealed that my left sided UC is now Pan-Colitis. I started Prednisone and my symptoms started getting better only to get worse after tapering Prednisone.

I restarted the Vit E enema protocol in 2011, but this time I did not include chicken in the diet. It did not help me this time. Later, followed SCD for around 3 months – did not help me.

Now, my GI wanted me to go on Biologics. To get a second opinion, I went to another GI and he prescribed Sulfasalazine, Prednisone, and enema with Mesalamine & Entocort. He asked me to start Budesonide once I tapered Prednisone to 20mg. My symptoms started getting better, BMs went from around 15/day to around 10/day, but it was still bad.

Thanks for persistence of my wife, I restarted Vit E enema protocol. This time added chicken too. Started reading Healing well and Thanks to all members who posted their experiences, I now make smoothie out of Banana, Yogurt, Flax Seeds, and Chia Seeds (Flax and Chia seeds are soaked overnight). I add VSL#3 DS, Flax seed oil, and L-Glutamine to it and drink it twice a day – first thing in the morning and again in the evening around 5pm. It helped in better formed stool and also reduced frequency.
Currently I am at 5-8 BMs/day, depending on how strictly I follow the diet, how stressful my day is, and whether I take any other medication like Tylenol/Mucinex or not, etc.

So to answer your question, stereofidelic89: I feel that medication helps me to some extent - but my symptoms are lot better with diet modification and supplements.
Posted 6/29/2012 8:25 PM (GMT 0)
Ray,

Welcome to the forum; I am so gad you've found us.

I'm sorry about your diagnosis and current flare.

I am a little surprised that your doc directed you to the internet to find out more info on UC.

As far as diet, I believe it's a very individualistic process. It's a matter of finding out which foods you are intolerant of. I would suggest you start a detailed food journal, wherein you write the foods eaten, resulting symptoms (with grading scale 0-10 in terms of severity), etc... and you will probably be able to see some correlations.

Personally, I started out with the SCD diet, and whilst it enabled my BMs to go from 15-20 per day to 5-6 per day, it did not stop the excessive bleeding I was having with every BM. I have been on the Paleo diet, which I find very good, and as it is anti-inflammatory I am a great proponent of it.

You've put yourself on a good list of supplements.

I would suggest you might want to try adding: L-threonine amino acid powder.

You may want to check on this link: https://www.healingwell.com/community/default.aspx?f=38&m=2376156#m2452020 for more details on it.

I would also recommend you check into LDN, low dose naltrexone.

For a full listing of the things I have done that got me in remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

I wish you good luck, and I hope you start to feel better.

Please let us know how we can help.

 


Posted 8/16/2012 4:24 AM (GMT 0)
InSoFla:

Thanks for your post and wishes. And Sorry for the delay in responding.

InSoFla said...
I am a little surprised that your doc directed you to the internet to find out more info on UC.

I was surprised too. And this is one of the reason that he became my "ex GI" :-)

InSoFla said...
I would suggest you start a detailed food journal, wherein you write the foods eaten, resulting symptoms

I do maintain a journal when I try something new. At other times, I maintain it off and on.

L-threonine and LDN are in my list of things to try.

Last month, I tried FT for around 15 days. It only helped little in improving my symptoms.

InSoFla said...
I wish you good luck, and I hope you start to feel better.

Please let us know how we can help.

Thanks. As of now, I do not have any questions in particular. But I will let you all know when I have.
Posted 8/16/2012 12:47 PM (GMT 0)
I think he has my doctor. There are some things I don't like about my doctor and some that I do. I have been through an autoimmune disease before and I am glad that my current doctor isn't afraid to tell me like it is without blowing any sunshine up my you know what. So many doctors try and fill you with false hopes when they know this disease is chronic and there really isn't much they can do about it other than treat the symptoms and that the drugs that are available to help are really nothing but bad news.
Posted 8/16/2012 10:24 PM (GMT 0)
Ray,

My pleasure.

Let me know how I can help you.

 

Posted 8/16/2012 11:09 PM (GMT 0)
Ray-
How exactly do u do your vit E enemas. ?
Posted 8/16/2012 11:09 PM (GMT 0)
Ray-
How exactly do u do your vit E enemas. ?
Posted 8/19/2012 5:28 PM (GMT 0)
SS0000:
I follow Sheldon’s protocol for Vitamin E enema. I squeeze out 100% Natural Vitamin E (Tocopherol) into a cup, add around two tsp. distilled water. Suck up with smallest ear bulb syringe available (usually 1 oz.). Administer it as other enemas. Wash outside of the bulb at the end of the procedure.

When I did it for first time in 2006, I started with 2*400 IU capsules of Vitamin E, and increased it by 2*400 IU capsules/day until I reached around 14*400 IU/day. Now I start with 10 to 14 400IU capsules, even if I have a break in the routine.

Changes I did which I think are not in Sheldon’s protocol:
1. I try to mix water and Vitamin E before administering. One of the ways to do it is to suck and release the mixture in the cup repeatedly using the bulb. The mix will turn into whitish watery solution at the end of this process.
2. Take out as much air as possible out of the bulb before administering.

Please let me know if you have any questions.
Posted 8/21/2012 10:24 PM (GMT 0)
RAYOFHOPE, THANK YOU
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