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PCORI To Give CCFA $2.5 Million for Diet Related Studies on IBD

Adam iHaveUC guy

Adam Scheuer, founder of iHaveUC.com

Some news and…

It’s pretty incredible!

The Patient-Centered Outcomes Research Institute (PCORI) who has lots of money in their annual budget, will be sending a check to the Crohn’s and Colitis Foundation of America (CCFA) for $2,500,000.

And, what’s better than that (In my opinion),  is that this money is going to be used to:

study the effectiveness of the specific carbohydrate diet and Mediterranean-style diet to induce remission in patients with Crohn’s disease

(Feel free to read the whole news story directly from the CCFA website here: First-Ever National Study of Dietary Interventions to Treat Crohn’s Disease Receives Funding)

So who is this mystery angel called PCORI?

I had never heard of this group before, but it turns out, they might be some genuinely nice folks:), I say that with a tiny smile on my face because often, it is difficult to figure out who is funding what when it comes to research in the ulcerative colitis and/or Crohn’s Disease/IBD world.  But this time, it seems like the tax payers of the United States of America are the ones who will be flipping the bill for this research.

The Patient – Centered Outsomes Research Institute has this listed on their about us page:

The Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit, nongovernmental organization located in Washington, DC, was authorized by Congress in 2010.

Also, they have a vision and mission of this:

This approach is reflected in our vision:

Patients and the public have information they can use to make decisions that reflect their desired health outcomes.

And our mission:

PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.

So, again, to me, it looks like a pretty nice non-profit, I went and did some research into the members of the governance committee, and again, only a few folks I would put on the “suspect” list…

Why am I being so critical…

About such a nice gift of $2,500,000 to research how diet interacts with Crohn’s Disease which is the older brother of Ulcerative Colitis??????

Here’s the reason:

For far too long, definitely ever since I was diagnosed with ulcerative colitis back in October of 2008, there were all sorts of people crapping their pants off for research to be made into the interactions of diet with IBD.  And, mainly this was coming from the patient side.  Especially when patients(and include me on this list) would tell their gastroenterologist doctors that they felt diet may play a part in the disease for WHATEVER reasons…and an instant later, their GI doc would tell them:

“You know Sally, Jane, Frankie, Ted, Petra, Rodrigo, Bev, Bob, or Adam…

Diet plays no part in this disease, you can eat whatever you want, and it makes no difference”

This would usually be followed up by something like…”There is no research at all to suggest that diet plays any part in this disease”…

And tell me something, that is pretty annoying to listen to, especially from the third, or fourth GI doctor when you do the whole 2nd opnion doc dance, which many of us do.

Follow this up with the reality that other UC’ers and/or IBD’ers talk about how diet has helped them out, and what the FU-MAN-CHUU Is a UC’er to do???

Heck, I believed my GI doc when he told me that diet played no part in my UC back in October of 2008, actually within two weeks of my diagnosis, I had 3 GI doctors (Two from Stanford Medical Center, one from the Palo Alto Medical Foundation) who said this…so I did what any other normal UC’er would do…and I believed them and ate whatever I wanted (while I was taking the high doses of prednisone and Asacol that they prescribed).  And, yeah, it wasn’t until I met another UC’er who followed the Specific Carbohydrate Diet, who was in REMISSION, and who had tried all the medications that I had, did I finally come to the realization that, HOLY CRAP…maybe diet does in fact play a role in all this (or at least for some people).

So anyways, my long winded rant is actually a big thank you to the Patient Centered Outcomes Research Institute for moving forward with this.

News story links to the original news on this:

http://www.ccfa.org/news/dietstudy.html

Helio Website News Story – Here

If in fact there is a link in the “scientific world” between diet and IBD, Crohn’s/Colitis/ whatever, it would be great if the scientist could start publishing the heck out this, so other GI doctors on this planet won’t deny that there just might, and I’m talking just a slim friggin chance, that their patient’s might benefit from mixing up the old diet and putting somethings in the mouth and keep other things out.

Good job PCORI and CCFA, may the study/research move forward with no conflicts of interest, and may the true results be broadcast to all interested people, both patients and doctors alike, and heck, I’m sure the pharma companies can find many ways to conduct business around this absolutely crazy theory that just maybe, and I’m talking for sure its a very wild card chance and all, but maybe diet does play a role here, at least for a few percent.  Concentrated foods/bacteria in pills, poop in pills…the list can go on and on right, we’ve been talking about this for years now…come on big pharma…pick it up!

Have a great weekend, and thanks to all 8 of you who sent me links to these stories the past few days, Graham, Katherine, Jerry, Tom, Alexandria, Maureen, Sydney, and Tomas.  Awesome reading!

Adam







32 Responses to PCORI To Give CCFA $2.5 Million for Diet Related Studies on IBD

  1. tess March 26, 2016 at 2:15 am #

    wooohoooo!!
    I share your frustration n passion Adam!!
    Thanks for sharing.

    • Adam
      Adam March 26, 2016 at 2:19 am #

      Hi Tess,

      Thanks, and actually, upon reading the rant, which was not intended to turn into that… I’m really not wanting to be frustrated as much as happy for this type of news coming about, because there has been research conducted, but nothing that has gotten wide acceptance, and hopefully (no matter what the results are of this), it will gain some traction with moving more and more research that isn’t solely medicine based on our disease:) Enjoy the easter vikenduuu:))) -Adam

      • Tim Gottus March 26, 2016 at 10:31 am #

        Adam, maybe this could lead to insurance companies reconsidering all the expensive supplements that are not being covered today. Also the naturalistic holistic docs with $175+ hourly rates! I just paid $240 for a package of 4 acupuncture sessions that may or may not help. This kind of research may overtime influence what insurance companies cover. That’s a dream come true!! Step aside big pharma because I really don’t know if my Lialda works but I’m scared to stop spending $964 a month on it!!! Thanks for the update and I love what you do!!

      • Gisele April 9, 2016 at 11:10 am #

        I agree … For years I heard the same thing… Diet doesn’t play a role until 4 yrs ago when Children’s Healthcare of Atlanta(CHOA) offer me the option of having both of my kids go on the SCD diet. We never got on their research as our kids couldn’t swallow the video capsule that was required but we follow the protocol. Now 4 yrs later we r still on SCD and in remission. Follow up research has been done in small scale by CHOA at Scottish Rite and Seattle Children Hospital. I’m currently involve with Improve Care Now a network of 87 pediatric GI center, parents and patient. They have also submitted a proposal to PCORI to study SCD on kids. The proposal is still pending. There is hope that the statement that most of us have heard diet has nothing to do with IBD will soon change.

      • Meliza Grover May 5, 2016 at 5:10 pm #

        Hi Adam I was diagnosed with severe ulcerative colitis 2 months ago I’ve been in and out of the hospital I am taking prednisone for 2 months now,few weeks ago I developed Cidif after they treat my infection I start my remicade infusion it was indeed success the first time but few days after my infusion my symptoms came back and after 3 weeks I had my another infusion it was awful I vomit a lot and after my infusion my symptoms got worsen and now I am here in the hospital again because my infection came back(Cidif) my doctor told me when my infection go away I will switch to humira injection.i am losing hope it’s like every treatment I am taking it is not helping.

        • Adam
          Adam May 7, 2016 at 8:02 am #

          Hi Meliza,

          I am very sorry to hear what you are going through. Unfortunately, the Remicade medication does not work long term for around half of the patients who try it. (The same thing happened to me, the first time I tried it within 24 hours I thought I was cured…unforutnately the 2nd and 3rd infusions were not helpful and after I moved to Humira, which for me was also not a success. Everyone is different).

          First things first, talk to your doctor about other options for treating the Cdiff like Fecal Transplants which are proven in studies to be at or above 90% effective. (He/she should know about FMT for treating Cdiff.) http://www.ihaveuc.com/fecal-microbiota-transplant-questions-and-answers/

          Also you can read the Humira reviews here:

          http://ihaveuc.com/humira-reviews

          I wish you the best,

          Adam

    • MR S March 29, 2016 at 2:00 am #

      Personally I believe that there may many causes for UC. One of which may be diet! I’ve tried everything and nothing works! and have never been in remission for 8 years! Thankfully I never bleed! but experience urgency several times a day!
      I’m a stress head and this is another area that doctors have no idea about and deny that stress is the cause but may concede that it aggravates the condition!
      My management technique is to get up early , empty out and I’m fairly good for most of the day! and I don’t eat much during the day only in the afternoon!

    • Rose April 5, 2016 at 10:59 am #

      I Adam have the PCORI and CCFA come up with an answer that diet plays a part in colitis.

  2. Graham from England
    Graham Lee March 26, 2016 at 2:42 am #

    I think we all share your frustration Adam. I just can’t fugure out why some very important problems take years or even a decade or more to be addressed. Even though the information is there both politically and healthwise, those in control seem so far behind the curve!

    Anyhow, I just want to add that you may well have had a direct or indirect influence on this actually coming about. You will have added weight to the argument and the need for this kind of research, I have no doubt.

    Great work!

    • Adam
      Adam March 26, 2016 at 2:49 am #

      What up G,

      Thanks again for sending over this link, and more than that thanks for being the Reigning Olive Oil King of the Planet (hint to all who don’t know about or haven’t read Grahm’s stories, they are all listed here and MUST READs: http://www.ihaveuc.com/author/graham2/ )

      On an absolute side note, what I think would be really cool is if somebody from the UC/IBD community decided to get into an internship and/or working/and or governing this little(big) non-profit organization called PCORI in Washington, who is set to get hundreds of millions of dollars in funding over the next many years. Heck, this might be the organization that UC’ers really need to fund some “not completely” western med backed research/solutions. For anybody interested in researching this non profit, details are here on their site: http://www.pcori.org/about-us

      Thanks again Graham, and have a great weekend with your peeps up in the UK,
      A

  3. Graham from England
    Graham Lee March 26, 2016 at 3:35 am #

    Getting involved in such organisations would be an interesting step. I mention politics again because this happened here some years ago. Many who for years had no control or influence (due to the political colour directing public institutions) actually gained positions within those institutions instead.

    I also noticed the research is looking at the Mediterranean diet. It may not be as effective as SCD but I find it easy to follow and has its greatest asset, EVOO at its very heart.

  4. Shelly From maine March 26, 2016 at 4:46 am #

    Awesome….thanks for the share and rant!
    As equally important…I have also been part of the CCFA studies….you can choose if you just want to be part of questionaires or give samples(blood, dna/ saliva, and yes….poop…..)YOU can choose what YOU want to do and how much. It is tied to a University (UNC??) I encourage all to sign up and be part of the progress. I have seen the questions change over the years to include alternative treatments from vitamins, probiotics to recently medical marijuana! And it is FREE…you do NOT have to be a CCFA member and it helps you track your own health over time!
    Happy weekend, Easter, etc and good health to all,
    Shelly

  5. Shelly From maine March 26, 2016 at 4:54 am #

    Here is the link
    http://www.ccfa.org/ccfapartners.html

  6. Ellie March 26, 2016 at 6:15 am #

    Wow, this is fantastic , Adam. Loved your rant as you took the words out of my mouth! Lol! I feel totally in remission with SCD and tell everyone about it. Even though my GI in Providence RI says what all the docs say about diet having nothing to do with this disease, I went up to see Dr Vijay Yajnik at Mass General In Boston who did the clinical trials on Entivyio, which I really don’t want to take but my GI has been pressuring me to take. In Dr Vijay Yajnik’s GI office, there is a research assistant trying to get patients to follow SCD for a study but none of the patients are willing to try it. I can’t be in the study because I’ve been following it 4 years. So, hopefully this new grant will get UC patients willing to follow it. If anyone in our group is interested , perhaps they can get in touch with Dr Yajnik’s office.

  7. Bev March 26, 2016 at 6:48 am #

    It will be a GREAT day when it is finally realized that DRUGS do not help these conditions.

    Natural is the only way to live with these conditions!!

    Hooray!!

  8. Jamie Barrett March 26, 2016 at 7:45 am #

    Thank God for you Adam! We all share in your frustration. Thank you for all the education you have provided us. SCD Diet, Supplements and FMT. It all really helps. The hardest part is to keep stress at bay.

    O.K. getting somewhat off topic. Has anyone experienced taking Curcumin2K. Turmeric and black pepper for inflammation?

    • Chris Anna April 2, 2016 at 2:24 pm #

      Hi Jamie,

      I take Jarrow brand Curcumin 95 with meals, L-Glutamine 2000 mg a day3x’s a day in between meals and Mega Red Krill oil for inflammation. I have read the black pepper enhances the curcumin, so if I cook with it, I use it.

      I am considering the sad diet, though the burn off part, ugh. I go on a liquid diet for two to three days when I have a flare, though I don’t have a gallbladder, and have IBS-D and UC. Triple whammy.

  9. Eileen March 26, 2016 at 2:18 pm #

    Wowsa Adam……you took the words right out of my mouth on all counts. Feel exactly as you do. I’ve been on the SCD for 9 months and in remission. First time in nine years. My Dr and several 2nd and 3rd OPINIONS by other GIS later, who all told me diet has nothing to do with symptoms. Drugs made my symptoms WORSE. I am SO Grateful to You, Graham and Bev. My protocol now is the SCD, Renew Life Critical Care, Curamed (Curcumin) ansd EVOO. Feeling great! God Bless you all for sharing! I actually Love you all for giving me my life back…..sniffles!

    • Bev March 26, 2016 at 2:47 pm #

      This is the best thing that we can all hear.

      Thank you Eileen from the bottom of my heart.

      This is what we all want to have happen and when it does, we can’t even put into words what it means to us.

      All of us dealing with this condition (s).

  10. Sher March 26, 2016 at 3:06 pm #

    I’m happy to hear Drs are actually listening to us! I’ve been to 3 GI’s (two retired) since 2001 the 3rd never even heard of the supplements I was taking! She had to ask me what they were! I had more support from my family Dr than the GI’s… I hate to be a Dr jumper, but when I feel I know more about UC then they do & Im paying them for their expertise seems like a joke!

    Also to Tim, I also shelled out hundreds of $’s for meds (Lialda being one). When I took myself off (w/ the observation of my family Dr) I felt exactly the same as when I was on! I was literally throwing $$$ down the toilet! I didn’t feel better or worse, just showed me that it was doing nothing!

    I’m not saying going med free & diet & supplements are going to “cure” you… I think everyone reacts differently. I do know when I took the steps to put my health into my hands I felt so much better & happier. I also feel I was having side effects from all the meds. I used to get sick w/ cold/flu body aches way more. My Dr also tested my blood & found I was really low on Vit D, so we added that as well.

    I must admit I’m not perfect, when I’m feeling well I cheat…. eat poorly occasionally and drink occasionally (I’m human). I do need to learn more discipline! However being mostly med free ( I take proctofoam & lomotil or Imodium during a flare) has given me way more freedom, flares for me seem to be seasonal & I deal w them without 20+ pills a day that cost $$$$ and did next to nothing to benefit me!

    ~ good luck everyone

  11. Risa Freeman March 26, 2016 at 3:23 pm #

    Adam, you are and have always been an amazing resource. Until each person realizes that what they eat can and will help a lot of people will still suffer from this horrible disease. Thank you. And you were not ranting, just trying to get your point across to all who are suffering.

  12. Isaac March 26, 2016 at 3:55 pm #

    Thank you so much for posting this, Adam!

    I just had a checkup with my GI doc 2 days ago, after a month and a half of being diagnosed and almost immediately starting the SCD (I’m doimg pretty great by the way – currently tapering off Prednisone and taking 4.8 g Lialda, hope to end that some day ;-), and she told me she had read Breaking the Vicious Cycle and was weary of diet being effective. I bugged her more about it (I’m also frustrated) and she told me that was her belief primarily because there haven’t been any large medical atudies conducted on diet, for one, because Big Pharm won’t foot the bill obviously, and also because it’s “hard to get patients to follow the diet!” Well I say, ya, it’s hard, but with a little encouragement and motivation, ESPECIALLY from a doctor, maybe more would be willing to stick with it. I know I am, regardless of what doctors tell me, and definitely because you, everyone on here and elsewhere in the SCD world have motivated me and kept me strong – not to mention I’m feeling better than I have in quite some time.

    Thank you, Adam and all y’all. Gonna maybe look into participating in this study… Anything to move forward – and stick it to Big Pharm ;-)

    Hell ya <3

  13. Donna G
    Donna G March 27, 2016 at 9:59 am #

    Thank you so much Adam for your tireless work. It is people like you willing to dedicate themselves initiates change. People read your site and tell their doctors and evenually they will have to listen. Doctors are way behind on this, everyone of them has told me that diet is not an issue. I know the SCD is restrictive and difficult but why assume that people aren’t willing to try it. This illness can bring you to the point of trying anything and how much better when it feels somewhat in your control. I can tell you personally that what you are doing here with this site changed my approach to my health and has made a difference in my health and happiness. Thank you.

  14. Graham from England
    Graham Lee March 27, 2016 at 11:24 am #

    Some great comments.

    This may be too simplistic but if many other diseases can be helped with diet then a bowel disease sure as hell can be! As we know right?

    As some have explained, if a doctor says not then you should consider another doctor because they probably just read the manual. Always question and never settle for no as an answer.

    Have a great weekend IBD family!

    • Bev March 27, 2016 at 11:49 am #

      Less can be more…and simple is best!!

      You as well, Graham…a happy long weekend to you and yours as well.

  15. jamie Barrett March 27, 2016 at 5:35 pm #

    I would be curious to see what steps GI doctors would take in their health, if they got UC? Could be interesting. Just saying.

    • Shelly From maine March 30, 2016 at 5:48 pm #

      You know it’s medical protocol!
      I think we have had 1 or 2 Dr.’s write…couple years ago or so.
      The gut bacteria research is helping to create some change. Time will tell!

  16. Greta March 27, 2016 at 9:33 pm #

    Adam,

    I have stumbled onto a book ” the Medical Medium……..” by Anthony Williams. He states in that book that U.C. is caused by : (drum roll please) Shingles in the colon. I read and re-read that and truthfully, it is the only thing that makes sense to me. Still, I have not healed. Of course this guy gives you tips on how to get rid of that virus, metal poisoning, and other underlying issues by using food and supplements; so there is a reason for this disgusting diagnosis, unlike what the medical doctors tell you: ” We don’t know what causes UC.” It is the only thing, in my case that makes sense. Shingles create skin ulcers and are on the nerve endings, causing pain, and they are not easy to heal, externally, and the virus lies dormant until the 2 things happen: physically run down and/or under much stress. So, Diet does matter and can even rid our bodies of what is causing that UC. I am in and ready to try this approach to get off Humira forever!

    • Rebecca February 13, 2017 at 8:11 am #

      Greta,
      I just searched to see if anyone else on here is following Anthony William’s book and was happy to see your post. I just started it. I am drinking my celery juice right now. :) What has been your experience with it?
      Rebecca

  17. David March 28, 2016 at 6:21 pm #

    Adam: This UC’er is very familiar with PCORI. These folks are for real and doing a lot of great work with the studies they are funding and the information sharing they are encouraging. Hats off to PCORI and CCFA!

  18. IO March 31, 2016 at 8:33 pm #

    Honestly, this is great! I’ve been symptom-free for 3 years thanks to SCD, no, no flareups, nothing.

  19. uc family boy April 29, 2016 at 5:29 am #

    How we eat and when we eat and what happens to that is something that can’t be assessed, so it will be interesting to see how this investment will be used efficiently.

    For examples, Garlic absorbed in Stream cooked Salmon will deliver the minerals in the Garlic alongside ‘capsules/pockets’ of omega 3 better than having garlic and salmon grilled together.

    Also the diets being researched will work differently for different people based on their microbiota composition, therefore should a profile be obtained of the composition first and how that, against the diet works….?

    Nonetheless the investment and research is a sign of concern in IBD moving in the right direction. And we are all for that!

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