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Ulcerative Colitis
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Posted 5/12/2014 2:39 AM (GMT 0)
Been a while since I posted. Had FMT(Fecal Transplant) done in Sydney. Worked GREAT. for a few months. Would highly recommend it. But I was one of the cases where it didn't hold long term, and we can'd do here in the states easily. Now symptoms are back and I can feel Lialda isn't enough. LDN is on order. I won't go on stronger drugs. I'm tired of all the supplements and daily modification depending on symptoms. Three options I'm deciding between are

Strict GAPS Diet
Strict SCD Diet
CBD Oil (not MMJ, CBD Oil from Hemp) - legal in all states - hempmedspx.com/

Would love to hear from others

I've read, and spoken to some first hand where GAPS + SCD reverse the colon lining over 2 years, riding of symptoms and meds, back to a "normal" life.

I know first hand accounts of CBD reversing cancerous tumors and keeping IBD in check, few drops a day, without it symptoms appear(note this friend is also on meds + strict diet).

Thoughts from you guys?

Post Edited (beachlife) : 5/12/2014 2:49:05 PM (GMT-6)

Posted 5/12/2014 4:56 AM (GMT 0)
May I ask why you wont go on stronger meds?
Sometimes diet just cant help UC :(

But I def suggest trying all three of your alternative options.
hope one of them will work for you! :)
Posted 5/12/2014 4:59 AM (GMT 0)
Can't you do another FMT? I suspect if it helped before, why not do it again? Some people are on continuous FMT courses (every 2-3 weeks) for maintenance.
Posted 5/12/2014 8:33 AM (GMT 0)
@embersglow - thank you. Just a personal decision after reading some books(Drug Muggers by Suzy Cohen and others), and talking to a few doctors.

@Guardian - Good question. I did 10 implants in Australia but here in the States it DIY, and do not have a suitable donor at the moment.

I've heard so many great testimonials of GAPS and SCD, even Paleo AIP....
Posted 5/12/2014 11:46 AM (GMT 0)
Don't want this to sound bad but I remember you posting on here with various alternative ideas which apparently, none of them has worked. You seemed pretty high on them at the time, such as a chiropractor who guaranteed success. You say you're tired of all the supplements, which apparently didn't work either. With all of these kind of things you have done I'm surprised you haven't done the diet thing already. Maybe you have and it didn't work but you felt you didn't do it 100% so now you are going to attempt 100% compliance. FT has a good success rate with C-Diff but C-Diff is not an autoimmune disease. This is a clue that you have a messed up immune system and that at least in your case(and most of ours), a messed up immune system is not going to be cured by a diet of any kind. I can't remember if you have tried any real drugs at all but the 5ASAs are probably more safer than LDN. Don't believe that crap about Big Pharma and all drugs are bad but LDN is magically good because it's not made by Big Pharma. A drug is a drug is a drug and an autoimmune disease is an autoimmune disease and is not going to be cured by a diet. Some may have success with various diets but it is possible that their particular UC cases were not technically an autoimmune disease, as in they may have been misdiagnosed. Your case is an autoimmune disease because your FT worked for a while but the autoimmune part of your disease kept on chipping away at your progress because you weren't doing anything to stop it from returning while in remission.
Posted 5/12/2014 6:10 PM (GMT 0)
how were the 10 FT treatments spaced? were they over a week or two and you had benefit for a couple months? or did you do them every week for 2 months ... etc?

If you got positive response from FT, I think it is evidence that probiotics and other manipulation of gut microbes may be of benefit to you.

you could try oral probiotics, and even probiotic enemas.

FT donor can be a hurdle. Maybe try to locate clinic that supplies donor material. (Some on here have mentioned them.)

There are also about a dozen FT trials right now on trials.gov. Maybe one of those would suit.
Posted 5/12/2014 6:26 PM (GMT 0)
Just wanted to make two points about not trying stronger drugs:

1) A chemical compound is a chemical compound. Just because one is made by nature (as opposed to a drug company) doesnt make it inherently safe, and there is no logical reason to suspect it will be. In fact, the number of unsafe compounds found in nature is infinitely larger than those produced by drug companies.

2) You have to consider the long term effects of chronic inflammation. Sure, taking some drugs MAY cause a bit of damage, but that damage is almost negligible compared to the damage caused by constant inflammation. Not only will the chronic inflammation lead to a ridiculous amount of irreparable scar tissue in the colon, but it can also lead to systemic inflammation and the development of other diseases. Without question, pharmaceuticals are the best option with regard to getting rid of inflammation, and by opting to take a less effective, more "natural" path, you are setting yourself up for a LOT of long term health issues.

That's just my two sense, and its obviously your decision so I wont push any more than that : ) I personally just think that the "natural" path should be used in combination with the pharmaceutical one, not in lieu of it
Posted 5/12/2014 8:47 PM (GMT 0)
@Marauder93 - it's interesting. The drug vs. natural beliefs. I respect your opinions. Curious, have you read drug muggers by Suzy Cohen Pharmacist? Have you read what the former editor of New England Journal of Medicine has to say? Here's an article: ethicalnag.org/2009/11/09/nejm-editor/ The questions I ask are rhetorical, but perhaps something to consider. I'm glad to hear you are having success with your therapies. For me, I know Lialda isn't enough, I'm about to give LDN a shot, but refuse to go "higher", biologics, immune suppressors. My body, my decision.

@DBwithUC - I went with CDD in Sydney. 5 days, weekend off, 5 days. Then I tried 4 additional at home with frozen sample from them but I was unable to hold them. So just 10 in total, the change was pretty extreme, from mental clarity and anxiety lessen to pain gone and allergies lessoned(Prior to this Rice would completely zap my energy - no longer the case). Was rather amazing. But I did go into the FMT with 70cm inflammation. I do VSL#3 DS daily but it's not enough and I'm not a fan of the Maltose or Corn Starch they put in there, wonder if it's doing more harm than good. May switch to a SBO soon like Primal Defense or BioKult

@garylouisville - Your memory is impeccable. Thanks for your input. As you can tell, I'm logical and big on testimonials and referrals. That particular Chiro, while he wasn't for me, did significantly help a woman overcome I spoke to who has UC. But for me his communication skills were the deal-breaker. In the end he helped my tweaked neck heaps, and then I stopped with him. I'd go-to another Chiro if I found one I trusted. I was doing really well when I Was going. FT has a good success rate with other than C-Diff as well, I Welcome you to join the facebook group of people worldwide with numerous ailments. First hand stories, some great, some not so great. All looking for wellness. For me, 10 wasn't enough. I could go back to Sydney, Medical Visa, I loved my time there so it's a thought. Surprised there isn't an option in Baja, anyone want to open one with me? Seriously. Oh, and regarding the natural vs. drug debate, see my response to Marauder93

I don't judge anyone here for their healing approach on their body, I ask that you give me the same respect.

My question is around GAPS, SCD, and CBD. I'm talking tonight to an MD friend of mind who has IBD and did 2 years of SCD.[url]
Posted 5/12/2014 9:16 PM (GMT 0)
I believe with UC most of our problems center around our immune systems attacking and killing some of the good bacteria in our guts, causing an imbalance in our microbia, which leads to inflammation and our UC symptoms. The FT's rebalanced your gut microbia and made you better but they do not solve the underlying problems of your misfiring immune system attacking and destroying good bacteria in your gut. That's why when your FT's were finished, your gut microbia kept on getting worse and worse until the symptoms were visible once again. This process will never stop. In order to stay in remission you would have to get FT's at regular intervals for the rest of your life. Since our problem is our immune systems attacking the good bacteria in our guts, diet isn't likely to help with that.
Posted 5/12/2014 10:42 PM (GMT 0)
I don't know if you tried WOO but it could help you as it helped many others (fingers crossed for you )
Posted 5/12/2014 11:03 PM (GMT 0)
Well I did 8 weeks of every saturday bloodwork and to my surprise all metrics improved dramatically on ASACOL HD which I only took to satiate the new GI. So in my sig you will see it with Qing Dai and RS diet plus the old standards.
Posted 5/13/2014 12:23 AM (GMT 0)
@ Beachlife, treatment plans are such a personal choice. I'm the same way as you are I don't want to have to take hard medications. I'm so afraid ! My flare is bearable ... How ever I'm loosing hope my flare will go away with Salofalk. It has been six month now... Some days It fell like it's going to go away, I keep my hopes up to find out 5 days latter it got back to where at was at the beginning.

I'm presently thinking at the possible diets I could try. I'm not saying I will always say no to other drugs than the anti-inflamtory ones but I sure will try a lot of stuff before I try stronger drugs.

I totally respect the ones that have made the choice of taking stronger drugs and in a way I envy them to be able to make that choice. There are many ways to deal with this disease but none of which are easy.
Posted 5/13/2014 12:29 AM (GMT 0)
i did strict scd for a long time and also tried AI paleo. scd helped more for my symptoms since AI paleo doesn't limit fiber. i do better with low fiber and lots of meat, eggs, dairy. i you haven't tried diet mods, it could help your symptoms. it doesn't do anything for the immune system still attacking my colon, but i poop less.
Posted 5/13/2014 12:35 AM (GMT 0)
@jeanloup - Appreciate that. We're 95% sub-conscious. Call it what you want, but yeah, WOO works. Sometimes referred to as "spontaneous remission"

@aguywithuc - glad to hear it! Asacol worked well for a few years, then Colozal for a year or two, then Lialda for many more years. But I can tell it's not 'enough'. And according to my Personal Dr, she's not surprised, it doesn't address the root cause, only mask symptoms I'm told. I'd be on top of the world if Lialda/Meselamine did enough to control UC. Did qing dai come from your Acupuncturist?

@Chantrelle99 - Totally Agree! Everyone now and then I'll sit and think or meditate on trying Remicade, or 6MP and within seconds my body fills up with the answer. A resounding No. If I felt it would work and was open to the side affects, I'd jump on it now that I have insurance again. But it's not an indecisive, should I or shouldn't I, within seconds I have an answer. Will that change in the future, possible but unlikely, but right now this is my decision. Sorry to hear your flare is persistent. Have you tried any alternative therapies? What diets are you thinking about? I've spoken to a few on SCD, GAPS and Paleo AIP.
Posted 5/13/2014 1:11 AM (GMT 0)
beachlife.. you sound a lot like me.

I also refuse the biologics.

Id probably pick an scd diet first with NO DAIRY, maybe even no eggs.. there is also the auto immune paleo diet. I also like the reset of Thorne mediclear plus a modified diet.

Umm.. Hi, I looked at your blog. I know you.

Go see my doctor, you are here.. he cured me.. I think maybe he is worth atleast going in and talking to. He is better then Dr. P! Obviously you do not have the other symptoms I had going on that led me to him, be he is amazing. I have a friend whose son is seeing him for EE instead of her gastro. Ill facebook you so you know who I am.
Posted 5/13/2014 1:41 AM (GMT 0)
So currently in full blown remission but wanting 'perfection' I added wild rice to natural chicken breasts and chia bread and today walla - Perfect-Poop !

Hope it lasts.

Try RS, ASASCOL HD and see what happens. Navy beans are only a couple times a week now, cold pasta EOD and looking to Chia to replace psyllium products.

Post Edited (aguywithuc) : 5/12/2014 10:33:47 PM (GMT-6)

Posted 5/13/2014 12:19 PM (GMT 0)
Have you ever used rectal meds?
Posted 5/13/2014 12:25 PM (GMT 0)
How severe is your UC? If you don't want to go on stronger meds (totally understandable) then some day surgery may be inevitable.
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