Breakthrough Regarding Crohn’s Disease – What It May Mean for Colitis

Adam Scheuer, founder of iHaveUC.com

Adam Scheuer, founder of iHaveUC.com

There has been some pretty impressive news from the scientific world the past few days, and although it doesn’t have “Ulcerative Colitis” in the headlines, I think there’s all sorts of reasons for us to be clapping our hands.

Many different scientists, gut biologists, researchers and several other really smart people have finalized some initial parts of a very large scale study.  The study looked at gut bacteria and how it plays a part in Crohn’s disease.  And guess what…they have come up with some incredible findings.

Here is a quote from Helio, a gastroenterology site:  “Patients with Crohn’s disease experienced abnormal increases and decreases in specific gut bacteria, with harmful microbes flourishing and beneficial microbes missing, according to a recent study.”

Helio also made another comment about the findings of the study which is also a major breakthrough and challenge to what many doctor’s have previously believed:  “In addition to identifying the microbial imbalance, the study also indicated using antibiotics to treat symptoms of CD in children before diagnosis could be counterproductive”.

Here are some links to look more into some of the details.

The actual study itself is available for you to read here:  Actual Study Link

News Story about the study (not as much detail as main study): News story in basic terms

As many of you know, I’m a big believer (almost 5 years now yikes…) in the role that gut bacteria plays in ulcerative colitis.  Heck, there’s thousands of us thinking like this!

So seeing this on the top of my Health section of google news a few days ago was awesome.  And receiving emails from so many of you with links to these stories afterwards was awesome as well.  Right now is a very exciting time, and the reality is that progress is being made to better understand why and how our colitis symptoms have the tendency to get out of control for what may seem like a complete mystery.

Are we going to start seeing all sorts of new science linking gut bacteria imbalances to UC?

Time will tell, but I sure think there’s a very good chance.  If the drug companies can figure out ways to treat or dare I even say “CURE!” UC by getting the gut bacteria in check..well, then I think we will all be reading more stories and studies like the one listed above even sooner.

As much as I bad mouth big pharma companies, I’m thinking that if they came up with some pills, or some super um…probiotics, which western medicine GI docs (just like your doctor!) were sold on by pretty drug reps, well I think I’d maybe even start to like those guys once again.

Until then, let’s all just celebrate some of this incredible news.  For many of us its great to be seeing even more evidence that our previous suspicions may very well be correct (about the gut bacteria connection to IBD), for other’s this might be an eye opener.  And no matter what, don’t get discouraged if you feel like you are only seeing “Crohn’s” related stories in the news.  UC and Crohn’s are similar in so many ways, it’s a win win for all of us.

Have a great week, and congrats to the science that’s taking place.

Adam Scheuer

****** ( IF YOU’D LIKE to watch some videos with a world famous gut biolologist from Stanford University…feel free.  I conducted an interview with this awesome genius over three years ago on this exact topic of Gut Bacteria, and you can for sure learn something.  Yes the video quality isn’t the finest, but good info either way.)   Here’s the link to video #1:  http://www.ihaveuc.com/gut-bacteria-part-1/





171 Responses to “Breakthrough Regarding Crohn’s Disease – What It May Mean for Colitis”

  1. bevMarch 22, 2014 at 7:37 am #

    OMG! OMG! OMG!

    I am SO excited!!!

    :)

  2. shelly in maineMarch 22, 2014 at 8:17 am #

    Progress! My G.I. Dr. was talking about that over a year ago.

    And FYI…CCFA is running what they call a Biospecimen Feasability study for those interested. You don’t have to be a member to do these things and i also take constant surveys online for CCFA for their general studying of IBD. This information we give them only helps us and future us’s! :-)

    • bevMarch 22, 2014 at 8:27 am #

      Future us’s!!

      I’d coin that Shelly…I really would. Fabulous!

      • shelly in maineMarch 22, 2014 at 8:54 am #

        :-) haha. I usually say us UC’ers but thought I’d change it up!
        Happy healthy weekend all! :-)

  3. AnnMarch 22, 2014 at 8:19 am #

    Hey Bev, I knew you would be right on with this! Adam has shared some very good news! I am feeling great at the moment now that I am on the SCD. Thanks to Adam and this website I truly believe the diseases of the gut will be “CURED” as long as people are willing to take control of the bacteria that resides in our bodies. Take care for now. Ann

    • bevMarch 22, 2014 at 8:26 am #

      Ann!

      I feel the same. Something is very close…just on the horizon…I am sure of it!!

      :)

  4. Victoria MarieMarch 22, 2014 at 8:47 am #

    All of the news about Crohns Disease and Ulcerative Colitis of late has all been very encouraging and I believe there may well be very interesting times ahead of us. However I do worry that many are getting swept up in a world wind of ‘we almost have a cure’ craze. There is nothing more damaging than false hope so I would just like to say to those suffering not to celebrate until a cure is on the table. Though all signs do look promising :) Here’s hoping xx

    • bevMarch 22, 2014 at 9:49 am #

      True, Victoria…we all tend to get excited only to be let down time after time…just like those poor families of the missing Malaysian airplane.

      Human nature I suppose. We want so badly for something good to happen! Let’s just hope that there is something to this…

  5. SebastianMarch 22, 2014 at 8:55 am #

    Yeah, that is great news!
    For many years I was wondering is there any way to cure UC. About a half year ago I found website, about treating autoimmunology diseases with fecal microbiota transplant(FMT). After reading many articles and speaking to ppl, who had done it in the past I decided to give it a try. Preparations(finding donor, testing, meeting with docs) took some time, so I’ve started FMT 4 days ago! Today I am going to have my 5th enema(and my plan is to make 10-12 enemas). For now I can’t really say if it is helping, but for sure something is happening ;)

    What is more I suppose that bacterias in our gut are also resposible for mental illnesses, but for now I can’t say much about it.

    • JenniferMarch 22, 2014 at 11:53 am #

      Hi Sebastian was wondering if we could speak about FMT- I have been looking into it but of course my dr is discouraging me but have heard great things about it. Would love to ask you some questions?? Thanks, Jen

      • SebastianMarch 24, 2014 at 1:33 pm #

        Hi!
        Yeah, no problem! I am also quiet new, since I had only 5 fmt for now, but I can tell you eveything I know ^^ Just write on my e-mail: antelius14@gmail.com

  6. JohnMarch 22, 2014 at 8:59 am #

    I had really good results using FMT. I did around 10-12 infusions before I stopped. I was in a bad flare when I started and had a colonoscopy after my first 3, then continued. I’ve never gone into remission so quickly. I’m still on azathioprine, but I swear FMT played a major role. Even in other remissions I’ve never had rock hard poo like I do now. I think our microbial friends play a huge role.
    @Sebastian – keep going!!

    • JohnMarch 22, 2014 at 9:21 am #

      Oh forgot to mention – UC since 2007 Pancolitis. Also treating with Helminths (human whip worm) started that in Dec 2013.

      • MaryJune 7, 2014 at 5:55 pm #

        Bev,
        I feel sad also for those who have suffered with their condition, tried the medications, suffered even further from the cruel side effects and in the end they have no choice but colon removal. Liam dropped down to 5 mg prednisone from 10 mg yesterday and this morning is vomiting, nauseous and has a headache. He has experienced this before, usually when he gets to 10 mg, so we know what is happening, but, another cruel side effect from a drug (the previous gastro prescribed this, not Prof Borody) which isn’t a great help compared to the side effects (except in taking the edge off the cramps at 40 mg) even then the old gastro says it is colitis causing this. Also, mesalamine caused a duodenal ulcer in him and since ceasing the medication 15 months ago, his endoscopy showed the ulcer has disappeared. The old gastro refused to take him off somac (ulcer relief) though and said he needs to stay on it regardless of normal endoscopy. What a load of rubbish!
        Bev, you know you have helped my son and he still takes the probiotic, astaxanthin and
        l glutamine and I am only too happy to share our experiences in the hope of helping others. Have a great weekend.

  7. Nikki in Chico
    NikkiMarch 22, 2014 at 9:22 am #

    Adam, thank you thank you thank you for being so bold and brave and creating this site. You are making noise in the scientific community as well, bringing the issue of IBD into the limelight. Crohn’s, UC, whatever they are very closely related. Thanks for the info! YAY!

    • bevMarch 22, 2014 at 9:50 am #

      Bold and brave…that’s OUR Adam!!

      We claim you, Adam, sorry…you are OURS!!

  8. CathleenMarch 22, 2014 at 10:32 am #

    I have been having the worst UC flare up ever this past 2 weeks. I have been adamant about using the HOPE diet, high fiber, probiotics, enzymes and when I ran out for a month of my probiotics, toppled with the most stress I have ever been under in my life, whammo, I got hit with this flare up. My doctor now thinks I have UC and Chrones, lucky me. For the first time in 5 years, I have had to go back on 60mg of prednisone and 4000mgs of mesalamine. I am pissed, but had to. IF ONLY THE DOCTORS WOULD HAVE PRESCRIBED PROBIOTICS IN THE FIRST PLACE! I have been a huge advocate of probiotics for years. Thanks for the support and for the info. PS. The probiotics that work for me are Renew Life, 50 billion or more…

    • HEATHEN HOLIDAYMarch 24, 2014 at 8:08 am #

      I am in the same boat as you… currently upped my dose to 60mg of pred from 20mg.. NOT TOUCHING THE BLOOD. This flare started over the past month when I just recently moved; a stressor.

      Are you currently eating a high fiber diet right now with your flare? Because I am so damn confused on this, are we supposed to be eating high fiber while bleeding this badly?

      I am going about 3-5 times in a 24 hour period, TONS OF BLOOD, TONS OF HAIR PULLING PAIN. I also just switched BACK to Asacol from Apriso to play a trick on my body and see if that helps at all… but this prednisone which usually works great isn’t touching this bleeding this time.. scary!

      • AmyApril 16, 2014 at 9:45 am #

        Did your doctor prescribe you enemas along with the oral meds you are on? Sometimes enemas are the only thing that help me to stop the bleeding. Prednisone usually does the trick, but I HATE IT.. so sorry that you are dealing with this :(. A soft foods diet usually works best for me also…I try not to include high fiber foods when I am flaring. Mostly bananas, cooked chicken and fish…rice..and I eat veggies like spinach and avocados that are soft and do not have seeds. Hope this helps and hope that you feel better soon!

    • harshOctober 8, 2014 at 10:36 am #

      Don’t loose hope. Please dont take high fibre diet till the time you are in a bad flair. but start with a small dose of turmeric may be 1/4th of a teaspoon with curd twice a day before meals. fully ripe papaya after lunch and isabgol 5 to 10 gms with 2 glasses of water before sleeping. continue all this with your medicines whatever the doctors have advised you. I am sure God will help and you will gain better health. Stay blessed.

  9. MaryMarch 22, 2014 at 10:56 am #

    Thanks to these wonderful, intelligent researchers, this is great news for Crohns patients.! Also, I hope this finding will start to challenge the minds of Gastroenterologists who believe that diet and probiotics have no effect on ulcerative colitis and Crohns. Research seems to be centred more around gut flora imbalances for these diseases, which hopefully will bring better treatments with less to no side effects. We definitely want a cure and thankfully, there are some clever minds working on this!

  10. Juliet
    JulietMarch 22, 2014 at 11:36 am #

    I honestly believe a great many of the diseases that are rife today are down to imbalances of gut bacteria! I’ve been controlling my UC with 24 hour fermented yogurt and supplementing with magnesium. No meds since last November.

    • bevMarch 22, 2014 at 12:57 pm #

      Enough said Juliet!! Exactly.

      I believe in natural all the way with UC and probably Crohn’s as well….that’s why the meds DON’T WORK. Because that is not the way to truly treat this condition.

      • Juliet
        JulietMarch 22, 2014 at 2:16 pm #

        Absolutely Bev!

        The Asacol ended up causing worse problems for me. I am happy to find so many like minded people here :-)

        • bevMarch 22, 2014 at 2:44 pm #

          Same with me…the asacol made everything worse! I thought it was the UC because that’s what the doctor told me for 15 years…I wish I would have realized and known sooner…all that useless money spent on meds that made me feel like I was dying…ugh.

          Then, the doctor wants me to take biologics…even stronger more dangerous medication…I don’t even think so!

          Never again.

          • harshOctober 8, 2014 at 10:39 am #

            I am also a patient of ulcerative colitis since 2004. But since last 6 years I am much better. Don’t loose hope. Please dont take high fibre diet till the time you are in a bad flair. but start with a small dose of turmeric may be 1/4th of a teaspoon with curd twice a day before meals. fully ripe papaya after lunch and isabgol 5 to 10 gms with 2 glasses of water before sleeping. continue all this with your medicines whatever the doctors have advised you. I am sure God will help and you will gain better health. Stay blessed.
            The most important thing is to avoid stress on any kind. Say no to all stress and anxiety.

    • EbonieMarch 23, 2014 at 1:48 pm #

      Juliet,
      Can you tell new more about using magnesium to control your UC? I have come across an indirect link to this in my research and would be very interested in what you know as well.
      Thanks.

    • EliJuly 5, 2014 at 6:58 pm #

      Juliet, what is 24 fermented yogurt?

  11. john gerrishMarch 22, 2014 at 2:27 pm #

    I have got refactory pancolitis, consultant has moved me over to surgeon, for complete bowel removal. I have had 17 pints of blood transsfused,over past 18 months. 10 days ago i was ill with chest infection. Coughing up blood. Due to my medical history ,(blod clot on lung) ,i was seen straight away i local A/E. I have Pneumonia.. Perscibed 2very high does Anti biotic,s. After 3 days noticed an improvement, not only in lungs, but my U/C sympthoms have almost dissappeared, no appearance of blood in stools, and i have put weight on . Never felt so good for past 3years.

    • bevMarch 22, 2014 at 2:47 pm #

      Wow! Really John??? That throws all those theories of antibiotics being one of the culprits of causing UC by stripping the good bacteria from the gut right out the window!

      This is all really so confusing…

      It’s no wonder research on a cure is such a cluster***k.

      :)

      • WundererApril 5, 2014 at 4:44 am #

        Hey Bev,

        Love reading your comments on here! This is my first. Have been on SCD for a month and feeling awesome. Wondering if I should take LDN for maintenance just in case. Are you still doing LDN? Cheers

        • bevApril 6, 2014 at 6:18 am #

          I am Wunderer! I take LDN every night before bed, and like I’ve said, I am not certain if it’s done anything or is doing anything for the UC per se. I do know that I sleep like a dream on it, and that has to be good for me!

          Cheers
          :)

    • MaryMarch 22, 2014 at 4:27 pm #

      Hi John, very interesting that antibiotics have made a difference to your ulcerative colitis. I would start building the good bacteria up with a strong probiotic and yogurt straight away, as the antibiotics have targeted your good and bad bacteria. The bad bacteria could have caused your gut problems. Wishing you continued good health.

      • john gerrishMarch 22, 2014 at 5:58 pm #

        Yes it is my i ntention to build up my good gut bacteria with probiotics, especially, after this heavy course of antibiotics, .Also going to Lugol,s solution to eradicate any yeast/Candida build up. Also i could have had bacterial colitis,in conjunction with ulcerative colitis, which may account for the sudden improvement. Had 7 x40mg Predisolone courses, still on 5mg .over past 30 months, also 4x1200mg Pentassa. /day. With little or no improvement.

        • MaryMarch 22, 2014 at 7:29 pm #

          John, look at the side effects of Pentasa. It works a treat for some, but one of the side effects is worsening of colitis. This was the case with my son, who went from proctitis to pancolitis whilst taking this drug, as well as upper respiratory infections, mouth ulcers, ITP, just to name a few! He is much better off without the drug.

    • harshOctober 8, 2014 at 10:41 am #

      Good for you. God bless

  12. Caroline
    CarolineMarch 22, 2014 at 2:56 pm #

    This is such exciting news – even though many of us suspected this connection for some time, it’s awesome when this research in the medical community gets legs behind it! Thanks for sharing and hope everyone is having a pain-free day. :)

  13. HEATHEN HOLIDAYMarch 22, 2014 at 3:10 pm #

    I have some questions that are rolling around in my head lately if anyone would like to please chime in and answer:

    1. Stress seems to be a big factor in bringing on a flare. Does stress create more “acids” in our stomachs and do those same “acids” kill off the good bacteria??

    2. When people ferment and culture foods, does that mean they are creating the bacteria that is only going to let them digest THAT particular food? For instance, if you make fermented cabbage, it makes the good bacteria so that you can EAT that type of cabbage? Like, say, you wanted to eat bread… would you have to ferment that bread to be able to EAT that same bread later if your (bacteria that eats -that kind of bread- was killed off by antibiotics?) Does this make any sense? I don’t know if bread was a good example, but do you get my point here.

    3. The reason why I ask that is because it’s confusing on why certain foods are fermented and others not, and what does that mean that other foods are not fermented? Are they not fermentable?

    I read that Madonna has a personal JAP chef she uses and eats fermented foods every other day in her diet among tons of Japanese foods. This is very interesting.

    4. Anybody know about COCONUT KEFIR?

    5. Anybody ever have totally 100% liquid watery stools (mixture of blood AND feces) after taking Prednisone or after upping your dose on Prednisone? And how did you get your stools to safely form and makes some shapes again??

    5. Does anybody know anything about the Candida-Colitis connection? I have been reading that the GAPS diet doesn’t deal with the Candida. But there’s a Body Ecology diet online that does deal with healing the gut that includes the need to heal the body from Candida. I am almost positive I have a Candida problem… had thrush on my tongue a few months ago, got a yeast rash on my chest a month ago, and am very susceptible to yeast infections and UTIs. I read that prednisone can make you more ‘yeasty’ and I have been stuck on prednisone for years. I am wondering if this SUGAR-YEAST Candida thing is also a culprit in our Ulcerative Colitis?? Anybody know anything about this???

    Your help is much appreciate… going through a real stupid flare right now that is got me knocked back down again. Need a pickup!

    xoxoxo, HH

    • bevMarch 22, 2014 at 3:36 pm #

      Oooh, very provocative questions Heathen!

      To number 1…maybe…right? That makes a lot of sense! In fact, a lot of your questions are thought provoking. Love the fermented question. Also the candida, sugar, yeast connection.

      It all has to be tied in somehow I think. I too am prone to the odd UTI which seems like from out of the blue most times, and after I got a filling at the dentist a few months back, broke out into some sort of thrush thing in my mouth. I thought it was a latex allergy but who knows?

      I hope someone has some answers for your questions. How very interesting they are…

      :)

      • HEATHEN HOLIDAYMarch 22, 2014 at 3:45 pm #

        Bev,

        Thanks, but I am hell-bent on figuring this crap out. Pun intended. I can’t live the rest of my life like this and I don’t want surgery. I am avoiding the GI doctor right now like a plague because all they want to do is SURGERY or BIOLOGIC drugs that I want no part of either!

        So sick of everyone around me who I tell I am dying because of this flare right now to, “Go to the doctor!” “Go to the doctor!” I know they are just trying to help, but they don’t understand what we UC people go through when we “Go to the doctor!”

        If you, or ANYONE on here knows the answer to any of those questions, even if just one of them, it would help me out… please answer!!

        And Bev, I just ordered some fermented L Glutamine and just started taking the critical care pro-biotics. I am in a deep shit flare right now, so I will keep you posted when it comes in the mail this week. Some guy on here called his colon a “little bastard”… I think I am going to steal that, because mine is also a little bastard. He’s seriously pissing me off!!!

        xoxoxo, HH

        • KayleneMarch 24, 2014 at 1:05 pm #

          Hi Heathen I know u very angry now and I must not laugh,but I couldn’t help it. U really made me laugh. I’m also going thru a flare up now. Had my 1st 1 last year. Nothing is helping now, nt asacol,prednisone or antibiotics. I also do nt wnt surgery. Ur flare up sounds worse than mine. I’m also sick and tired. I wld like to have my life back.

          • HEATHEN HOLIDAYMarch 24, 2014 at 3:43 pm #

            Glad someone gets my dark sense of humor! :)

    • GailMarch 23, 2014 at 10:43 am #

      Hi Heathen,

      I just wanted to share some info on water kefir, since you mentioned coconut kefir. Recently, I attended a workshop on fermenting your own foods and started making my own water kefir. There is a difference between milk kefir and water kefir so you have to be certain to get the proper grains to start. Here are 3 good websites: yemoos.com, the raw chef.com and cultures for health. Perhaps you’ll be able to get help from a local health food store as well. These sites have a lot of information, though. I must mention, too, to start with just a bit at first when you begin drinking it. Let your body get used to it and then increase the daily amount. I like to put frozen blueberries, raspberries, strawberries, melon, etc in mine after it has fermented. I totally believe a gut imbalance is behind most chronic diseases. Like UC family boy commented, what comes first – the immune response or the gut imbalance. Personally, I think it’s food intolerances causing an immune response (makes sense since the body is apparently reacting to a “foreign invader”, which causes leaky gut, which causes inflammation and all sorts of organ malfunctions, including the brain. I also use oil of oregano but I have heard that we should be careful because it’s hard on the liver. It should only be used once in a while. I don’t know if that’s true, though.

      I hope you’ll find it interesting reading about water kefir.

    • WundererApril 5, 2014 at 4:49 am #

      Try rotating antifungals (olive leaf extract, grapeseed extract, oregano oil, caprylic acid) as spoken of on the excellent pecanbread resource site. I take one of these every day before dinner. Totally worth it. They combat candida really well and have other benefits. Don’t cost much and give added boost with the diet.

  14. bevMarch 22, 2014 at 5:03 pm #

    OM GOODNESS…we could not feel more the same!! I avoid the GI like the bubonic too…I haven’t had a colonoscopy in over three years, because…why? You know what I mean? They always turn out that there is ‘disease’ still active no matter how good I feel…then I am pushed and prodded into more meds no matter what, because I HAVE to take something, which I refuse…thus I am a ‘problem’ and ‘difficult’ patient…jesus…I just cannot do it any more.

    Ok, now make sure that you take that probiotic either at bedtime with no eating two hours before….or first thing upon getting up with no eating or drinking anything for at least a half hour after…or longer if you can. In fact, I am currently taking two per day because I encountered a good old flare after I got the flu shot this past October…one at bedtime and one first thing in the morning.

    Keep me posted…I wish like hell I could answer any of your questions. We need a naturopath expert on here I think…

  15. bevMarch 22, 2014 at 5:32 pm #

    …oh…and I curse my colon on almost a daily basis too…my bad…my pet word is mother something or other, tho…lol

    • HEATHEN HOLIDAYMarch 23, 2014 at 1:26 am #

      Did I mention on here that I was actually dumped by this Chinese doctor at Cleveland Clinic? Saw her one time in tears over a year ago, and didn’t follow her advice, so she wrote me a couple letters telling me to see someone else. I was also on prednisone at the time, like I am now, and she wouldn’t even renew my prescription. As you know, you can’t just cut it off cold turkey. I thought that was really negligent on her part.

      Got a new Dr. that I have seen once, but I am already hearing get another colonoscopy.. which I just had one last year. F!@NG ridiculous how they just can’t leave us alone and listen to US. We’re just meal tickets and guinea pigs to them, that’s all. I have met very few people that actually give a shit about my health problems and aren’t rushing me out the door. The doctors that don’t let you tell them about your symptoms and situation are the worst.

      Glad you told me the directions on the pro-biotic, because I think it just says take one a day with a light meal or something. So, you say, 2 in the morning and 2 at night? Because I am flaring like a beast right now.

      I just discovered something totally rad today at the Earthfare store. They have this PALEO bread… made out of coconut flour. NO YEAST, NO GLUTEN, NO GRAIN. It’s like ten bucks, but I am loving having some bread finally!!! And I took two teaspoons of coconut oil today and am getting some oil of oregano. Both of these kill fungus and are supposed to be good for our situation, too, so google those items and see what you think if you don’t already know about them. My next thing is to locate the CoConut Kefir, which is supposed to be the best in pro-biotic foods, way better than the yogurt. Earthfare didn’t have any.. either they were out, or they’re dumbasses.

      Oh… also look up ALLICON C… it’s crushed garlic. It’s the stuff that kills bacteria, cures everything in the world stuff, that you get when you crush garlic and let it sit for a few seconds. They also sell the supplements, which I am trying right now, too.

      Today my meal was water, baby food winter squash, carrots, avocado, paleo bread with pure sunflower butter on it or a couple eggs on it, a piece of Salmon. This is more than I have eaten in a week. I have lost so much weight with this flare, ughhh.

      Getting back to the topic at hand…we gotta figure out the gut bacteria-Candida-sugar-connection. We do need a holistic doctor on here… ADAM!!!!!! I did watch the interviews with the Stanford scientist on the gut bacteria, very interesting.

      xoxox, HH

      • MaryMarch 23, 2014 at 6:01 am #

        Hi heathen, oil of oregano is amazing!!! Liam was in a mild flare about a month before we were due to travel overseas. So, he visited his GI and he added an enema (colifoam) to his mix of meds (he takes 50mg 6 mp and somac). Within a day his mild flare headed south very quickly and the doctor wouldn’t take him off the colifoam So I had researched oil of oregano after reading someone had success on this site with it. He added it to peppermint tea with manuka honey and within a day there was improvement with solid bowel motions and gradually the bleeding stopped etc. he stopped it though because he felt great and because the doctor said the meds work not oregano oil. Well he flared again and now he is taking vsl 3 and he is good again. My husband recently used it when he had shingles and I was able to get rid of a sore throat within a day! I have mentioned it to friends and it has worked for their sinus issues, viruses, upset stomachs. As you can see, I love this oil and I believe in it. It is good you are taking a probiotic because the oil will deplete the bad and good bacteria.

        • HEATHEN HOLIDAYMarch 23, 2014 at 7:44 am #

          6MP? Yikes! Glad to hear he’s tolerating that stuff. I couldn’t get out of the chair to even walk when I tried that.

          Soooo, your son only took the oil through an enema? Or did he take oral supplements of it? Did he take it again with the VSL, or just the VSL?

          Bad news on the fact that it kills the good bacteria, too.. what a pain in the a$$ having to keep these creatures in our gut. Another bad creation flaw…. what was ‘GOD’ thinking when he thought THAT was a good idea. Going to have to impeach him if he can’t create a better human with better digestive tracks ;)

          xoxo, HEATHEN HOLIDAY

          • MaryMarch 24, 2014 at 6:55 am #

            Hi heathen, he started 6 mp at 75 mg which he had problems with and doctor dropped him to 50 mg . The enema he uses is colifoam and neither of these meds do anything., as he always flares when he stops the supplements. The oil of oregano (which he drank not used as an enema) got him out of a flare along with astaxanthin and l glutamine. His doctor (who I regret the day I ever put my son’s health in his hands) always maintains the medication is the only thing working. When liam dropped all supplements again, and became unwell, I was able to convince to convince him to try vsl 3 (he has tried this probiotic before with success) and he is feeling better again. His pattern of getting better with oil of oregano (attacking bad bacteria) and taking a strong probiotic (replenishing good bacteria) leads me to think more about gut flora imbalances mostly being the cause of uc . Also, you can’t take oil of oregano forever, but, I have read that those who have had success with it take it initially for a month, then when they feel the need take it for a few days and are back on track again. You are on a mission to fix your uc for good and I wish you every success!

      • bevMarch 23, 2014 at 7:16 am #

        Great post!

        No, not two and two….two total…I take one first thing in the morning, with water and then nothing to eat or drink OTHER than water for at least half an hour…an hour is better. Gives that little probiotic the best chance to do what it’s supposed to do without any interference.

        I take the other one at bedtime. Of course, I haven’t eaten or drank anything for two hours prior, either, again giving that probiotic the very best chance.

        I only used to take one each day, but that flare that happened in October needed more, and I’m almost ‘afraid’ to go back down to one. I should try soon to do that. Less expensive.

        I don’t know why the directions sometimes say to take a probiotic with a meal…that is ludicrous! The one we take is enteric coated so that it does not dissolve in the stomach, but rather right in the colon. Maybe other probiotics are to be taken with a light meal because they are not enteric coated and are problemsome to the stomach unless taken with food. Seems to defeat the whole purpose!

        :)

        • HEATHEN HOLIDAYMarch 23, 2014 at 7:39 am #

          Got it Bev, Thank you, I must have misread it! When I get my L Glutamine in the mail, I will ask how you take that.. stay tuned!

          • bevMarch 23, 2014 at 7:47 am #

            Anytime!

            :)

      • SherMarch 23, 2014 at 9:39 am #

        HH,

        I as well think there is a Candida connection, I put together when I was researching the darkened skin under my nose… My dr shrugged it off to being hormonal! So I put together the yeast/skin/UC thing… I have had success with taking the Oil of oregano, drinking ACV (with the mother), taking Bromelain and Curcurim religiously after meals. I drink Pau d’ arco tea and mix grapefruit seed extract in my water. Don’t be alarmed if it seems like symptoms aren’t improving right away because killing off the yeast too quickly can cause die off symptoms. Maybe intoduce the oil of oregano, my skin looks great from it. The Bromelain/ Curcurim is for digestion so that can still be used. And eliminate sugar! Yeast feeds off as you may know… Kefir is awesome when I’m in a horrible flare sometimes it all I can stand to eat drink, good luck!

        • HEATHEN HOLIDAYMarch 23, 2014 at 10:58 am #

          Sher,

          Can I ask what kind of Kefir agrees with you when you’re flaring? What do the die-off symptoms feel like, or what are they? And do you avoid all fruits because of their natural sugar? Have you had a Candida test to see how much you have or is there even one in existence?

          Don’t know how I am going to convince my GI Dr. to check into this Candida thing, and what would they do anyway, just prescribe some yeast infection meds?

          • SherMarch 23, 2014 at 3:20 pm #

            HH,

            I drink any kind of Kefir, from the health section of the grocery store or health store… I like the plain just fine. I am not so strict with my diet that I won’t eliminate fruits completely… But refined or artificial sugars. I know you can read book on anti candida that say to eliminate any form of sugar and this that and the other, but that would leave me nothing to eat!!! So I eat a small amount of fruit every day, unsweet applesauce I add cinnamon it’s great.

            I went to my dr and mentioned that I thought I had Candida, because I had a ton of the symptoms I looked up… He didn’t even entertain the idea that I could be right, just no I don’t think so…

            I also do not eat gluten as don’t many UC’ers… It alone has helped sooo much! I think I ate plain rice for like a month at first!

            Die off symptoms are similar to UC so you make not know the difference, it’s supposed to be diahrrea and maybe a slight fever, your body is supposedly getting rid of the yeast. I’m not sure if I had these or not because of my UC but you hear stories of others having a few bad days before getting better…

            Hope all goes well!

    • HEATHEN HOLIDAYMarch 23, 2014 at 1:31 am #

      LOL, I will fill the blank in for ya…. I ain’t skeeereddd, besides, cursing is pain management! I saw a YouTube video on it cuz ya know, I just believe EVERYTHING I read on the Internet ;)

  16. NeilMarch 22, 2014 at 7:43 pm #

    Hey there Heathen, there’s three things I take, 1 is slippery elm, which helps with the digestion track and inflammation, 2 is I take natural vitamin E which helps the ulcers heal, if your really bad you can take this with a small bit of warm water in a enema( google it plenty of videos out there) and also a strong probiotics!! Hopefully this may be of some help to you, I feel your pain nothing worse than a bad flare up.

    • HEATHEN HOLIDAYMarch 24, 2014 at 8:04 am #

      Hi Neil,

      Thanks, I have the vitamin E that I usually take orally, though, just started the critical care 50 billion pro-biotics, and I will have to get some slippery elm! What do you think about Vitamin D, magnesium, and a general multi?? Also starting Bev’s L Glutamine whenever it gets in the mail.

    • SherMarch 24, 2014 at 10:27 am #

      Neil,

      Good call on the vit e enema! It helped me tremendously out of a flare this winter! Within one week I felt so much better! I took a bunch of pure Vit E the d not the dl and poked a hole and squeezed into a small plastic brand new gladware… I did a ton at once bc I didn’t want to do this every day… Then I went to my local pharm and got a plastic syring that you serve liquid meds to kid, they just gave me like 3 for free! I suction up about 1 tbsp of vit e and very easily inserted directly every night, cleaned the syringe and placed in plastic bag, redo every night for about a week… It sounds hard, but It works and is easier than how I read to do on some web sites…. I don’t add the distilled water, it gets messy and I feel that going in, I feel like it’s too much… Anyways good luck

  17. UC Family Boy
    UC family boyMarch 23, 2014 at 3:58 am #

    No Question Bacteria play a HUGE part of diseases that stem from the gut, I like to thing communities like this make federations keep up and act!!
    The question is, if we can replace the imbalance, will the imbalance come back due to an immune system malfunction?!?
    It has already been Proven that the innate response doesn’t switch to a specific response in IBD patients. So here we see a constant general attack on everything from the good, bad and the ugly, and to make matters worse the nitrate released from inflammation offers bad bugs a chance to breathe in, and survive. So a cycle we need to be aware of when considering what came first, the immune malfunction or the gut imbalance!! Either way, inflammation, bad diets promote an imbalance.

    What I would love to see, is the chance to sterilise the colon of a UC patient, placed on a high omega3 diet with fermentable foods, high probiotic dose, and 30 FMT infusions.

  18. shelly in maineMarch 23, 2014 at 6:12 am #

    UC Fam boy…great add…did you have any success or have you retried?
    The other question and I’ve read some about too much of the “good” bacteria may also tip the scales.

    HH great questions and adds. Try and keep track of everything and intro 1 thing at a time if you can. Be careful with those “breads” and butters….they can be Very irritating and exhasherbate your flare…they are meant to come much later on. I can’t remember if you read Breaking the Vicious Cycle or not, but the science makes sense to answer some of your questions.
    Also, if you haven’t already, please check out the “Pecanbread” site…stages so you an see how basic and slow SCD is really supposed to go.

    Happy Sunday all! :-)

    • HEATHEN HOLIDAYMarch 23, 2014 at 7:53 am #

      Hi Shelly…

      Noootttt really following the SCD to the detail, in fact I am probably a little more strict in some areas because I don’t eat ANY dairy. This Paleo bread I am talking about has NO GRAIN, NO GLUTEN, NO YEAST, so it’s probably SCD safe for you. Didn’t realize that nut butter was bad during a flare? I have read so many people had success with sunflower butter and spinach. Oh well… the trials and tribulations never end! xoxo, HH

    • UC family boyMarch 23, 2014 at 1:31 pm #

      Hey Shelly,

      I did submit an update story to Adam last week so hopefully sometime soon it will be uploaded.

      But in a nutshell;
      I did do some home FMT. I only managed 9 before my colonoscopy finally came around. I will let you read the story when it appears but it’s encouraging for everyone interested in and have UC.

      I am litterally just nursing doing my first FMT since the ones last year. I went to India/Sri Lanka and triggered my UC so just trying to plug it with some FMT. Apprehensive about it this time around, but I plan to do 10 daily, maintenance of 2or3 a week and bring in the right probiotics, prebiotics.

      Being triggered abroad got me thinking, although I knew I hadn’t rid UC with the FMT, I knew it helped get me to what my scope results showed, but my Immune system was still filtering and selecting foreign invaders without true understanding hence symptoms coming back from being abroad.

      I do feel very confident if the balance could be brought back, that everything would be as per any healthy person. But will the symptoms come back if the system goes hard at defending and blowing everything from bacteria to cells (inflammation)?? This is of interest to me

      For now, day one of FMT. Kept in for about 3and a half hours so far after lavage (hate that part) this morning and FMT around 4pm GMT. Considering I had symptoms I am doing ok thus far with appox 6oz inside me…

      • shelly in maineMarch 25, 2014 at 5:32 pm #

        Hey UC Fam! Thanks…looking forward to your new story/update and continued updates on your newest undertakings. I wish you all the success and health and will keep my fingers and toes crossed!
        The science is so intriguing…like you said below to Adam. Back to your guinea pig status! Good luck! :-)

  19. AnnMarch 23, 2014 at 9:11 am #

    Hi All, I just had to chime in to say I am very interested in everything you are all saying. Right now I just know that two 800 MG tablets of asacol, a multi, two T of evoo and the scd is working for me. I was in a terrible flair Aug/Sept 2013 and at the moment I am completely healed and better than I ever have been in 25 years of having this disease. I really don’t think it’s the asacol but I have to include it with what is working for me now. I started with three 800 mg tablets a day and reduced it to two 800 mg tablets at the beginning of March and so far I am going strong. I would like to remove it completely but I am taking my time. I am also somewhat working with my doc. It is difficult to admit but they can be our lifeline when there is not much hope for anything else. I am very interested in the candida connection and have also started using essential oils. Just opened a bottle of oregano oil to help me with cold symptoms. It tastes terrible but I am willing to try healthy alternatives. Cheers for now. Ann

    • bevMarch 23, 2014 at 9:41 am #

      Hi Ann,

      That’s the thing, isn’t it. If what you are doing is working and keeping you 100%, then why change it?

      Because all of our body chemistry is different, perhaps the asacol is not hurting or hindering you in any way, and in fact, helping. It has to help some people, otherwise, why would it be available at all, right? At least , that makes sense.

      You do what you feel is right for you. We are all merely here on this site for information, support, and insight.

      Happy days!
      :)

    • shelly in maineMarch 23, 2014 at 11:22 am #

      Ann…you do what you have to do to live with UC and not be its prisoner. I think Adam’s Dr. And some other research may show there are some benefits to some of those meds. Remember, too, that is how sometimes some meds are used for other things…some Wanted/potential positive benefits!!
      Be well, Stay positive,Shelly. :-)

  20. Donna G
    Donna GMarch 23, 2014 at 7:25 pm #

    This is to Heathen Holiday. I had some thoughts on your questions. Stress taxes your immune system, just like a cold or flu or vaccines. I also believe that extreme exercise can compromise your immune system. And lack of good sleep. When my immune system is compromised I have to lay a little low which can be very difficult to do, I know. As to fermented foods, they are full of probiotics, unless they are cooked or too old. As well as providing probiotics, the process of fermentation makes foods more digestible and the nutrients more available for your system. I’ve been making sauerkraut, it tastes wonderful, I truly believe that eating fermented foods is a good thing. I’ve also been making kefir and love it. I make sourdough bread for my family but I don’t eat it myself, I just give it a deep sniff and dream of eating it! Hope you get out of your flare soon. Oh and the candida, if your gut flora is whacked out it’s not too surprising that yeasts can take hold, the good bacteria that fight off invaders are in too low of numbers and can’t do their job properly. Everyone should read “An Epidemic of Absence”, about autoimmune disorders, very interesting.

    Donna

    • EbonieMarch 23, 2014 at 9:40 pm #

      And here’s what I’ve learned, that stress, any kind, will deplete your intracellular magnesium stores. And a magnesium deficiency (which most Americans have, along with gut imbalances) is linked to a deregulation of TNFa cells… the very cells that biologics, remicade I believe, suppress. So stress depletes it and junkie diets perpetuate it, then because of gut imbalances nutrient absorption becomes tricky, the body’s ph is disturbed… And we have ourselves a problem, and a rise in auto immune disorders. All this makes sense why SCD and probiotics are so helpful.

      • HEATHEN HOLIDAYMarch 24, 2014 at 8:16 am #

        Sooooo…. we must all be taking a magnesium supplement?

        • WundererApril 5, 2014 at 4:58 am #

          Or you can buy some epsom salt. Like I did. Instead of taking it orally.

    • HEATHEN HOLIDAYMarch 24, 2014 at 8:19 am #

      Thanks, I will check that book out.. I am pretty positive I have a Candida situation. More info. needs to be said about its connection to UC, if there is one! xoxo, HH

  21. SharonMarch 24, 2014 at 5:59 am #

    HH,
    I can no longer take any of the western meds other than prednisone which was completely ineffective on my last beastly flare. After 24 years of UC I finally jumped in 100% to the diet. I ordered the e-book of what to eat the first 30 days on the GAPS diet and followed it religiously. I never ate the fermented fish or took cod liver oil or bought the supplements but I made every recipe (except liver) and didn’t even lick my fingers when cooking anything for my family. I went from 20+ bloody bms a day to 5-6 somewhat formed within a week. This was after 60 mg pred for 5 weeks did nothing. My GI doctor was over the moon excited for me. I did end up in the hospital with a fistula but I insisted on my special diet in the hospital and they sent the head dietician to meet with me. They only served me exactly what was on the menu we created and even went to Whole Foods to buy a few things. They were most interested in how my diet was healing me.

    I have been in remission ever since (4-5 months now). I just got back from vacation where I cheated ALOT. I still feel great and had NO symptoms. I am going back to my strict diet this week just to be safe. I eat scd or gaps and bake with coconut flour or almond flour now but did not use them in the beginning. The stages are very important to slowly re-introduce foods. I am not currently taking anything at all but I do love VSL #3DS if it was more affordable.

    • HEATHEN HOLIDAYMarch 24, 2014 at 8:13 am #

      That is encouraging! I did bump up my prednisone last week from 20mg that I have been stuck on for years to 60mg and usually it takes the blood right out, but NOT THIS TIME! Ohhhh…. and the pain of when I go to the bathroom with liquid stools, nothing productive at all but blood and liquid… the PAINNNNN! It literally drains me for the rest of the day, all I want to do is sit in the recliner with a heating pad on my back and my guts!

      I will look into that GAPS intro diet. I am usually very good about my diet, but I must be doing something wrong. Thank you for your post, that makes me feel a little better! xoxo, HH

      • SherMarch 24, 2014 at 10:46 am #

        HH,

        Sorry to say maybe the pred is no longer working for you.. After I was on and off for several year (once for over a year straight!) a nurse finally said,” hon this isn’t meant to be a long term med!” Then I used it as needed, the effect of it became less and less helpful, I haven’t been on for years and will never again but that’s a personal choice. Also are you on pain meds? I also had depended for years on them and realized after stopped taking, they were causing me to bleed, it was Tylenol w codeine… Not even ibprofin, I don’t have the reasoning behind, but I notice when I am prescribed again a flare comes back! Just some food for thought, I sure hope you get better soon :-)

        • HEATHEN HOLIDAYMarch 26, 2014 at 9:54 am #

          Thank you, yes, apparently the dreaded pred is no longer working for me. I am tapering down now.. currently at 50mg. Liquid stools, blood, and PAINNNNN.

          I do take Percocet. In fact, that and the heating pad is my ONLY relief. I won’t compromise when it comes to this, I have a son to raise. In fact, I read somewhere that this 80 year old lady with UC gets her doctor to prescribe her a tincture of Opium and she said it works wonders for her colitis. My Dr. would never do something like that for me, but then I am starting to hear stories about people smoking weed for their UC. Don’t know for just pain issues, or for remission issues as well… not sure.

          • SherMarch 26, 2014 at 10:32 am #

            HH,

            I have also heard smoking in general! I have considered nicotine patch during a bad flare! My sister who also has UC stopped smoking and whenever she starts flare subsides… Uh I sounds so bad that something bad for you can help?!? Wth

            I totally could have used opium tincture at times too… Percocet can do wonders for those bad days so I don’t blame ya there… I just became dependent on pain meds to function bc they can cause constipation, so it is deceiving at times… I myself didn’t heal until I was off… But I took them everyday, so we’re talking different story!

            Oh the joys of UC!

  22. stacyMarch 24, 2014 at 10:13 pm #

    I came across this website through a post on FB a fellow ‘Chronie’ had on his page. Did not know there were so many people out there that are as fed up, confused, angry at doctors, etc. like I am.
    I was diagnosed in 2003 and my life has never been the same. Funny that I say that, because in my eyes, I really have no life. Crohn’s disease has robbed me of life. I was able to continue working for about three more years before I could no longer function in ‘the real world’. In January of 2008 I developed a fistula between my small intestine and bladder. Had several feet of bowel (both large and small) and half my bladder removed. Doctor told me it was a simple surgery and would wake up with a few band aids. My fiancé had to give permission for the big cut after I was in OR because I had such a large mass of scar tissue that was not known beforehand. I woke up with 29 staples from my sternum to, well you know…..
    Oh, the horror stories I could tell. I could write a book.
    I fought disability for over five years. Talk about stress. I remember the first doctor that SS sent me to asked me if my illness had caused me to lose any weight. ‘Yes,’ I replied, “without trying I lost over 150 pounds in about 14 months”. When SS sent me that first denial letter, that doctor had sent his ‘findings’ and said I quote “patient has not lost any significant weight due to illness”. Are you serious?
    And it wasn’t just that doctor. Almost every doctor I have ever seen has given me that look as though I am completely out of my mind. I have not had a solid bowel movement in well over five years (no blood, thank God, but all liquid), I have such unbelievable pain that I have begged God to just led me die and get it over with. I’m lucky if I eat once a day, simply because it causes more pain and more trips to the bathroom. Docs don’t believe that anyone could use the toilet 15-20 times a day (and yes, that happens even if I don’t eat—-still can’t figure that one out).
    I take Asacol and iron. Used to take Imuran, but stopped about 3 years ago because docs didn’t see any benefits from it. Probiotics make me sick to my stomach, as does yogurt.
    I’m lucky to get out of the house once a month. In too much pain and terrified of a bathroom ‘emergency’. I have no life. I am only 44 and I want my life back!!
    I dream of finding a doc that believes what I say and wants to help me instead of just poking and prodding every orifice on my body. Don’t they understand? I’ve had so many tests done on me it’s crazy. MRI, CT scan, colonoscopy, ultrasound……..But when they don’t find anything ‘new’ they assume I’m making my symptoms up. I’m tired of all of it.
    I have chronic pain, constant diarrhea, nausea, you name it.
    I also have people around me that think “it can’t be that bad”. Makes me wonder if I am crazy! But then I see stuff on sites like this one and see others suffer like I do. Now what? I am at my wit’s end. I want to eat. I want to enjoy food. I want to get out and do things. I want to be pain free!!!!!! I want my life back, damn it!!
    Well, I have babbled enough. I just needed to vent.
    But thank you for this site. I will come back. It’s nice to see I’m not alone in my quest for a cure for this dreadful Crohn’s disease.

    • HEATHEN HOLIDAYApril 16, 2014 at 10:11 am #

      Stacy,

      I feel your pain… almost exactly, but I have the blood with the liquid coming out. I am freakinggggggg out right now very badly because I just had another colonoscopy on Monday and the doctor said ONLY OPTION IS SURGERY.

      I have tried 6MP, Remicade, pred, asacol, apriso… I am on 30mg of pred, 4 Apriso and 3-4 Percocets a day right now for pain and it’s not really touching it.

      The problem is, being a single mom, I can’t just take off work for 4 months and I have nobody to take care of me anyway while I recover, so surgery is just not an option. Does this mean I am going to freaking die?????

      I made another appointment with another GI doctor because I have only had ONE good one in the last 10 years and he retired over a year or so ago. Since then, I have been through now 3 of them. They all push drugs or surgery and I was even dumped by one of them for not following her directions on prednisone.

      Now, this last one is telling me that surgery is my only option, despite the fact that I told him my circumstances of why I can’t have surgery, at least right now… and also told him that the prednisone was not working this time. What does he do? He tells me to go up from 30mg to 40mg and double up the Apriso with an enema he prescribed. I am really confused on this prescription advice….more pred when I told him it’s not working this time?

      I have missed sooooooo much work, and I am so freaking tired and depressed, all I can do is lay here with a heating pad on me and dread when I get hungry.. dread when I have to use the bathroom…. I lay around and DREAD all day. I can barely get the dishes washed and my son off to school. I hate this!!!!!

      I was denied disability last year, and the Dr and people are telling me to try again, this time with disability lawyers.

      I need ANY and ALL the advice you have… and for anyone who is reading this, please! What do you do when they tell you surgery is your only option and you can’t do it???

      • bevApril 16, 2014 at 3:35 pm #

        This just kills me, Heathen. I wanted so badly for something to work for you! I feel that way about all of us.

        I assume that you tried what I take and it did not work. Shit!

        I wish I had more or different advice for you…man how I wish.

        Please keep seeking answers and doing what you want or have to do…I know all of this can really take it’s toll…but I really do see better things down the road…better times ahead for you. As hard as that is to believe right now…
        xoxo

        • HEATHEN HOLIDAYApril 16, 2014 at 7:51 pm #

          Bev!

          So glad you replied, your posts always cheer me up. Honestly, I have the same pro-biotics you have and I got the L-Glutamine, but I haven’t been taking it religiously every morning and every night on an empty stomach like you told me. Mostly just forgetting… I need to keep doing it and get more disciplined to give it a chance.

          Right now, I am having that extreme fatigue… low-grade fever.. slight chills.. pain in my knees.. pain in my abdomen.. pain in my back.. totally liquid stools, sometimes with blood, sometimes without… extremely painful bowel movements. I don’t understand how this food turns into pure liquid? Weird.

          I was told by my regular doctor I am slightly anemic.. any advice for that? An iron pill? He thinks I am also dehydrated and would like to put me in the hospital for 24 hours for some fluids. I want to go, but I am scared to death they are going to see something else wrong with me and I won’t be coming out of that place for a while.

          I gotta tell you about this last GI doctor experience and you tell me what you think about it. This is the 3rd GI doctor now since my favorite one that retired over a year or so ago. I told the nurse on Monday morning FIRST THING when I got there for my 4th or 5th colonoscopy that I have anxiety and I am panicked. I am always that way in a medical procedure situation, that’s just me, I can’t help it. So, what does she do? Act like I am freaking out for nothing because I have been through it before, goes and gets BENADRYL and sticks it through my IV, which did not make me fall asleep at all, in fact, it made me freak out even more because it sucked all the moisture out of my mouth and made my heart feel weird and dizzy and drugged out feeling which made me panic MORE. Then, when she was asking what drugs I was currently on, when I told her the percocets, she said, “Why are you taking percocets?” I was so fn’ pissed off, I snapped back at her, “Because I AM IN PAIN.” I get so tired of being judged or feeling like I am some pain killer junkie when they would probably kill themselves if they spent one day in my shoes with this.

          So.. bad nurse experience.

          Then, I had seen this GI just a week before and told him that this time, for the first time now, prednisone, is not working. Well, after I come out of my drugged out haze from the colonoscopy he tells me he raised my prednisone from 30mg to 40mg and told me to take 8 Aprisos a day/night instead of 4 in the morning, and gave a prescription for some enema… that I haven’t picked up yet, because I am confused on why I would only go up 10mg, especially when I told him it’s not working? WTF? Am I just being too critical or does this doctor seem weird to you?

          Then, he tells me…. ONLY OPTION IS SURGERY because I can’t take their designer drugs like Remicade, or 6MP, had terrible experiences with both. And it’s like they don’t even want to hear WHY I can’t wear a bag for 4 months or have the surgery because of my single mom and income situation. He just told me to go get disability. OK. I tried that. Guess I will try again.

          But, honestly, I really.. really.. really.. don’t want surgery. I am scared to death, and I hear only 50% stories of success, if that! A lot of people say they wish they never got it because they have the same problems they had before, and now they have a colostomy bag, too. So extra head-ache and maintenance.

          Every time I get a colonoscopy I get diagnosed with having left-sided UC, the upper part looks good.. but he said the rectum, lower left side is just diseased badly and needs to be out.

          What is going to happen if I don’t get surgery? Will I wake up one day and have to be rushed to the hospital, or what will happen if I don’t get this surgery??

          I feel like he gave me a death sentence, really… going to these GI doctors is so stressful and a big part of my stress of even having UC!!! And, you can’t get the medication if you don’t go to one, I tried… my primary doctor kept bugging me to get another one. I am sure he’s going to roll his eyes when he hears about this story, and then I am going to feel like I am being judged for being a doctor hopper or something, which I am not! It’s a pain to have to tell your story to a new GI doctor and re-establish a history.

          So, right now, which I usually get some relief from the percocets… I am not getting relief from them, it’s like my usual protocol of prednisone, and percocets will put the band-aid over my illness to get through the day.. to actually get out of bed, but now they’re not working ;(

          Like I said, I’ll take any advice you have right now, I am totally open minded. I do have another appointment with ANOTHER GI, but can’t get in his office until end of May. So I am going to be freaking out for another month and a half here until I get his second opinion, if I don’t die before then! Ugh, I am scared to death right now with this only option is surgery… is that true?

          • bevApril 16, 2014 at 9:56 pm #

            First…about the anemia…it’s no wonder, right?! The way that you are bleeding at times. The only thing that really worked for me (I was severely anemic) is called IRONSMART. It is a liquid and you can take it without ANY of the normal iron supplement side effects…like nausea, constipation, etc. I cannot tolerate the pills at all…they make me so sick! I still take the liquid iron, but I only take the minimum dose now. It’s really fantastic stuff. You have to remember to take it EVERY day….just like the probitiic and L-glutamine…lol…bad girl!

            As for that rotten nurse thing…Benadryl does the same thing to me! I swear, I am the wimpiest drug person ever! Some nurse put it in my IV once too when I was in emergency and it freaked me right out as well. I asked what she was giving me and she said, don’t worry, it’s nothing that will affect you at ll…bullshit!! It took awhile to wear off too, and she ended up pulling the IV out of my arm. I told her I could not tolerate drugs at all,,,but did she listen?? Nope!

            You hang in there, my dear Heathen Holiday…I am sending positive vibes your way….get that stool test…and take those natural things RELIGIOUSLY…lol

            :)

        • HEATHEN HOLIDAYApril 17, 2014 at 1:48 am #

          Bev!

          If this post (reply) comes out in the wrong spot, it’s because I didn’t get the little blue link that says “reply” by your name. It only appears on certain posts. It does that a lot on here, but anyway…

          Got it.. THANK YOU. I will track down some Ironsmart asap. Why do they tell me I am slightly anemic and then don’t tell me to do anything about it? I am really getting annoyed with this health care system that cares absolutely nothing about us. Maybe too many people are sick and they can’t keep up with the herd.

          Yes, I am a big baby when it comes to drugs, for good reason though, I have had some dangerous and scary reactions to them. It’s not a secret anymore that drugs (legal or illegal) can kill people. I want off all of these things… hate taking them, especially the prednisone I have been stuck on it for years, can never get below 15mg.

          One more thing I have noticed with this current flare that I forgot to mention…. MAJOR stomach rumbling, like a mad scientist lab of juices going on in there. I have this more so than any of my other flares before. What does this mean, if anything?

          I will keep you all updated and I just ran out of the Critical care, so I will be doing a lot of Internet shopping today. Thank you so much for listening and your advice, I don’t have anyone taking care of me or looking out for me, so THANK YOU. Big hugs!

          • bevApril 17, 2014 at 5:46 am #

            Not sure EXCATLY what the stomach rumbling means, but I know it ain’t good. We all know when we feel and hear that rumbling that things aren’t right.

            You know, my last hurrah on asacol resulted in even worse terrible flaring. I was put on Asacol HD because the doc figured I should take it instead of regular asacol, and it made everything so much worse in every way possible, and pretty frekin quick too! I lasted on it for two days, and promptly went back to the regular asacol (on my own…I just figured things out without consulting the doctor…I could tell it was the ‘new’ asacol that was causing a worse flare because it happened just like that)…it wasn’t long after that I quit meds altogether. That asacol really messed with me. My body does not like drugs, bottom line.

            You are so sweet. I want you to get better! I think the drug might be part of your problem, based on what you are saying. It was uncanny when I stopped mesalamine…I was so much better…strange how something that is supposed to help UC, in some people, can actually make it worse.

          • bevApril 17, 2014 at 5:47 am #

            …that was freakin’ I meant to write…lol

        • HEATHEN HOLIDAYApril 17, 2014 at 6:30 am #

          Hmmmm… well I just reverted back to the bottle of Asacol HD and took 3 this morning instead of the Apriso. Now, I am wondering about my symptoms since being on the HD, which I forgot and haven’t been keeping track. Actually, I didn’t even think to pay attention to a difference, I just blindly trusted the GI doctor when they switched me from Asacol-to- Asacol HD -to Apriso.

          Definitely think the Apriso is messing with me… even though I have less bathroom trips, I have more pain, liquid stools, and this really constant and loud stomach rumbling that has never been so bad or noticeable as it is now. The constant low dull pain, too.. Maybe I should give the Asacol HD a week or two and then see if I see any change? You think I would notice it immediately?

          I also thought they stopped making the regular Asacol because of the patent or something? I have been on Asacol or Asacol HD for years now, since my diagnosis in 2005 except for a few years when I was in remission when I got pregnant.

          I am reading now people’s reviews on Apriso… lots of people saying hair loss. Didn’t have that problem, at least not yet, but I have been on it for only a couple months now. (Same amount of time this flare from hell reared its ugly head.)

          • bevApril 17, 2014 at 7:45 am #

            Yes, apparently they don’t make regular asacol any more since I stopped taking it. That was almost three years ago now.

            I would think that you would notice anything quite quickly. We just get so used to feeling like shit (no pun) that we don’t even notice half the time what the meds are really doing to us.

        • HEATHEN HOLIDAYApril 17, 2014 at 6:34 am #

          Another thing I keep reading from people’s reviews… they say some drug worked well for them, and then all of the sudden stopped working. Makes it even harder to figure out what’s going on when this happens. This is what happened to me with the prednisone. I hate being on it, it’s apparently not working, and now my body is steroid dependent. So they say….

          • bevApril 17, 2014 at 7:42 am #

            Well, the longer I’ve had UC, the more I am seeing and realizing that all of the medical drugs do eventually stop working. Then, it’s on to the next, usually more powerful (and dangerous) one.

            Now, does this mean that all of the natural things will also eventually stop working? Perhaps. I can’t be sure yet. What I am doing is still working for me, two and a half years later. No medical drug ever did anything even close to that for me at least. To me, the natural things beat the meds any old day, at least based on my personal experience.

            I sometimes think that UC has a sneaky and sly way of adapting to anything that we try and heal our colons with. That might be a fact. It’s like we have to constantly outwit the little bastard…tiring and frustrating for sure.

            I still maintain that natural is better. At least we’re not damaging other parts of our bodies, like our liver, kidneys, heart, etc…to me, that’s concrete. I will go the natural way until it’s time to get the rotten old colon out, if it ever comes to that. I am hoping that it never will come to that, but I can’t hurt myself in other ways by taking meds. I just can’t do it. Call me paranoid…call me chicken…it’s just who I am!

        • HEATHEN HOLIDAYApril 17, 2014 at 8:11 am #

          Bev- That’s why I like talking to you, because I have the same mindset you do about natural is better. My goal every year is to GET OFF THE DRUGS! And it’s nothing but a roller coaster. The best I have been was last summer/fall with semi-formed by incredibly think pencil like stools. Spring time and BAM!!!! Although I did go through some recent stress having to move in February.

          I have been depressed lately, obviously, so I am watching a lot of fashion show videos, LOL, and saw that Karl Lagerfeld from Chanel eats a diet of only steamed vegetables, steamed fruit, and steamed fish. I have been on a diet close to that, and think that steaming the food is better, makes it juicier. What do you think about this? He doesn’t have UC or anything, but does have access to the best nutrition info. and doctors in the world, so that accounts for something.

          I agree with you on this UC thing taking on a life with its own mind. Are or were your flares different or slightly different every time? Mine are! No two flares are alike for me… this is odd, huh? But, yet my disease is still in left side.

          Just called the mean ole’ doctors office…. nurse said that if I had C-Diff he would have seen that my entire colon would be affected during the colonoscopy on Monday. What do you think about that? Also told her that I think the Apriso is not good… she just scheduled me to COME IN AGAIN! WHOO HOO.

          • bevApril 17, 2014 at 8:31 am #

            Well, that steamed veggies, fruit, and fish diet sounds like it would be great for everyone in the whole world, doesn’t it?! Can’t see that doing anyone any harm.

            My flares…were they different…not really, but they got worse every time, so I guess that is different. Always the gurgling and rumbling, the pain, the urgency to get to the can (!), the bleeding…ugh…isn’t it all just so awful?? It’s no wonder we get depressed! Who on earth wouldn’t?? Your whole life gets consumed by UC. Or, it can at times.

            So much for c-diff, huh? I would try and explain to the doc that you just don’t ‘do’ meds that well and that they all stop working. Classic UC merry-go-round. Be completely honest. Sure, he o9r she will likely prescribe something else, but at least you can document your feelings and let them be known…and always remember…you DO NOT have to take anything that you don’t want to take.

          • MaryApril 17, 2014 at 9:03 am #

            Heathen, it wouldn’t hurt to check for c-diff, just to make sure, when you do the stool test and for any other possible infections.

          • GailApril 17, 2014 at 10:45 am #

            Heathen,
            I would suggest to you that you get a copy of Jennifer Esposito’s new book that just came out “Jennifer’s Way”, or first of all, go to her website jennifersway.org. You might be surprised at how similar her symptoms were. It’s an eye-opener.

      • MaryApril 16, 2014 at 6:16 pm #

        Hi heathen,
        It is not fair you are suffering so badly! Biopsies taken during your colonoscopy hopefully will shed some light as to why you are struggling with this flare. I would suggest you ask for a stool test to check for C-diff and other bacterial infections.
        Last Friday, my son turned up at his gastroenterologist’s surgery (easy as it is across the road from his University!) as he was experiencing severe cramps, (which on Friday became unbearable) and bloody liquid. Doctor put him immediately on prednisone (which he probably didn’t need as it didn’t do anything) and ordered a stool test. Tuesday he received the results of stool test and he has aeromonis (never heard if it!) which is a bacterial infection . I did a bit of research and it can initially present as proctitis and Liam was first diagnosed with that. Anyway, he is on cipro and pain is subsiding and bowel motions are starting to return to normal. I hope this cld be the answer to his colitis woes.! Just my two cents worth. All the very best and hope you feel better soon.

        • HEATHEN HOLIDAYApril 16, 2014 at 7:58 pm #

          Mary!!!

          I totally sympathize with your son and his severe cramps. Are they happening just when he’s having a bowl movement, or is he also have pain down there all day and night, too? I have both. Obviously it’s worse when I am having a bowel movement. It hurts so damn bad, I want to kill myself, literally.. it’s that bad. I know.

          If you read my recent GI experience up above to my reply to Bev, you can see what I just went through. I am going to have to ask my regular doctor to give me the stool test.. can they even do that when you have totally liquid stools??

          Please tell your son I am there with him, when he is going through that pain, he is not alone. This disease is total hell, and he and you both have my upmost sympathy and support. Just by sharing info. and stories, it helps. Thanks to Adam for this site, too.. big hugs to him for that.

          • MaryApril 16, 2014 at 9:30 pm #

            Hi heathen,

            Firstly, you are going to get through this – do not let it control you! I am assuming Aprisos is a mesalamine. So, early last year Liam was experiencing the same symptoms as you are now now – severe pain (God bless him), anemia, bloody watery stools (I counted 22 one day), developed a severely ulcerated mouth, severe sore throat, fever, nausea etc. and dictir wanted to hospitalise him too. I nursed him (and I am no nurse) virtually night and day until his colonoscopy a month later (being Christmas break for the doctor) . He had an iron transfusion immediately though. I would give him lots of fresh mint and ginger tea with high grade manuka honey which gave I’m some relief. Luckily, the prednisone did work within a week, but with blood and semi solid stools, so pred was doing something. Also, he was on pentasa (mesalmine) and the dose was also doubled (just like your doctor is doing, so they have a set protocol).
            After his colonoscopy he was told you no longer have proctitis, but pancolitis and severely inflamed. I caught the doctor as I arrived and spoke to him and I asked if pentasa had caused this and he vehemently denied that it coukd do so and it is just the way this disease is, unpredictable. I now know fir a fact the pentasa caused his disease to worsen, because a few months later it had to be dropped because he nearly had renal failure from it and he improved remarkably. He was now off pentasa and prednisone. On the day he started 6mp my sin said he would try everything so I threw EVOO, l glutamine and astaxanthin and vsl 3and for the first time in 5 years everything was perfect , including perfect bowel motions once a day. Jus started improving within days, not perfect but improved! As
            you know 6 mp takes 3-6 months to work ,
            so it wasn’t that.
            Of course his doctor doesn’t believe in anything but medication and gradually influenced my son, including the GIs at the hospital he studies at and poor old liam was back to a flare when he stopped the supplement regime.
            I put oregano oil (4 drops) in his orange juice with manuka honey and put lots of crushed mint and oregano leaves towards the end if last year when he was studying fir exams and was flaring and he improved greatly.
            I know I have rambled on and on here, but the point I want to make here is why don’t the doctors look for infections a bit more(do multiply stool tests and yes, my son’s were watery and they tested as he he delivered in the dish. The drugs they give do not treat infections.

          • MaryApril 16, 2014 at 9:47 pm #

            Also, don’t worry about the nurse – there are kind, caring ones and there are those like the one you had and she isn’t worth thinking about! Put your thoughts into getting better.

          • MaryApril 17, 2014 at 12:30 am #

            I asked him about your question regarding pain and he had severe pain everywhere and felt it most of the time. This had been building for a week and he got onto it immediately. He did have a similar experience early last year, which is why I am beginning to wonder if he has had a bacterial infection which goes away after antibiotics but comes back after a while. Lots of positive energy to you also.

          • AnnApril 17, 2014 at 10:38 am #

            Dear Heathen – I posted before but there is quite a bit of activity yesterday and today. I would like to go the all natural way too but I have been on 3 – 800 mg tabs of Asacol, the SCD, 1 1/2 T EVOO and a multi since my bad flare in September 2013. I no longer have any blood or pain. I had one week of small amount of blood and pain and discovered I was drinking almond milk with added sugar. I immediately disposed of that and purchased the almond milk that is unsweetened. I was totally back on track in 3 days! Please consider the SCD and follow it to the T. I think it has really helped me. I would eventually like to ween off the asacol too but am willing to stay on it if this combination is working. I NEVER want to go back to the flare. I also think eggs really help. I eat two scrambled eggs every day. Good luck to you.

        • HEATHEN HOLIDAYApril 17, 2014 at 2:07 am #

          Mary!

          That is really interesting about the Pentasa causing renal failure. Here is something I just recently learned from another UC patient in the UK. He says that Apriso definitely made him flare, when before he was on Asacol. Not sure if it was Asacol HD or not, but he claims that even though they’re both mesalamine , the time release is different in Apriso. Now, I have been on Asacol and then Asacol HD for years. This is the worst flare I have been in to date, and now that I am thinking about it, it sort of coincides with when I changed to Apriso. I have a bottle of Asacol HD here, I think I am going to switch back to that this morning and stop taking this Apriso.

          Didn’t they stop making Asacol or lose their patent or something? Anyway, I have had 2 years in a row of kidney stones. Imagine that pain on top of the UC pain, unfreakinbelievable. I don’t think I would wish that on my worst enemies, really. So, not only am I going to ask for the stool test, (from my primary doctor, not this current GI) I am going to ask about this renal failure situation… which I looked at the symptoms and funny how some are very similar to UC symptoms! Did your son have a definite test specifically to see that he had renal failure??

          I love mint tea, so I am also going to get more of that. I am sipping on ginger tea with chamomile right now. I do have some raw, organic honey. I never know if it’s ok to eat honey or not while flaring. And I do need to get that oregano oil, I have read so many good things about it killing bacteria. I do eat the coconut oil, which is also supposed to be a bacteria killer and have all kinds of benefits. Got plenty of EVOO, so maybe I will throw a little of that in, too. The VSL 3 is so expensive, I have been using what Bev uses, the Critical Care stuff, 50 billion, I think. I have heard good things about the VSL, though, too.

          My experience with 6MP was immediate. I mean, the first 24 hours I took ONE dose, I was chair-bound with horrible flu-like symptoms and could not get up out of the chair. I knew it was the 6MP and stopped taking it immediately. Now, I have heard some people respond well with it, I am just one of those nightmare patients that is very sensitive to medication and have to be careful. The Remicade was even worse, but I won’t get into that again, now.

          Like I told Bev, I will be on here keeping you up to date and asking more questions, your son is sooooo lucky to have you as a mom. I would do anything to have a mom here to take care of me, what a huge difference that makes in recovery. Instead, I am the one sick having to take care of an 8 year old. He doesn’t deserve to have to live with a sick mom, I feel so bad for him. Big hugs and thank you.. keep the advice coming!

          • MaryApril 17, 2014 at 8:37 am #

            Hi heathen,
            You poor dear, as if you haven’t been through enough and then you get kidney stone’s on top of u c – a friend who had them said the pain was worse than giving birth!

            I think you might be on to something with mesalamine – it worked initially for my son too and then he started to have many problems with it and his u c worsened as well. His dosage was increased around the time 6 mp was introduced and it was during one of his routine blood tests for 6mp that it showed his creatinine (I think that is for kidneys) levels were heading for irreparable renal failure. How lucky was he that he had the blood test!!! I never go to my son’s appointments, he is very independant and has taken charge of his illness, but, I did go to a visit late last year and his doctor said he recently had two patients with irreparable renal failure due to taking pentasa – they ought to do routine blood tests on patients taking this medication! So, perhaps have a blood test as well when you visit your local doctor. I became suspicious of Pentasa and read the product information and my son developed an ulcer, low platelets (thank goodness he is back to normal there), worsenening of colitis, fever, nausea – all these side effects are in the product information. So you can imagine my horror when I found out his dosage of this drug was doubled by the doctor and not even my son would listen to me. Anyway, the day that medication was dropped was a huge turning point. No more 20+ bowel motions! no ulcer (had another endoscopy late last year) and everything else is ok. Except for the last week, which is improving.

            I do not like 6 mp and it has never worked. Only healthy diet (no gluten and dairy), vsl 3 ( I like the Critical Care as it is a slow release probiotic – bought it on a visit to the States last Christmas. My son refused it of course, but I took it and so did my daughter) . Bev is a great support here and I am grateful to her fir devoting her time and energy in helping others here – thank you!
            Heathen, I hope you have a relaxing Easter with your son and wishing you a new direction towards healing.

          • MaryApril 17, 2014 at 8:51 am #

            Also, read Graham’s posts re EVOO as you need to buy the right oil. And definitely try oil of oregano (must have high carnavol and be organic) .

        • HEATHEN HOLIDAYApril 18, 2014 at 3:49 pm #

          Mary!

          2 days now back from Apriso to Asacol HD… so far.. no all “totally liquid” bowel movements. Still not formed, but at least some sludge is coming out instead of just all liquid. Don’t know if this is a coincidence, or if that Apriso really is bad. It’s a brand new medication, anyway. But, then again, the Asacol HD STILL might be a culprit… and I agree with Bev and many others on here to get off this stuff entirely, anyway. I am going to guinea pig myself out for a little while here and see what happens. I will keep you guys updated. Thank you so much for all your support and response and good wishes. Thank you, it means a lot to me when I have nobody around here that gets what I am going through. Big hugs!

          • MaryApril 18, 2014 at 5:20 pm #

            Heathen!!
            I am so happy you are feeling some relief and the stools are a definite sign that you are doing some right! Oh I agree with you on melamine, for some it helps initially, but, if the body doesn’t like it, things go south very, very quickly .
            You need to get the biopsy results back from your colonoscopy re c-diff. I wondered about an infection though when you mentioned you have slight fevers, which is why I suggested a stool test for infections and if doing that, it won’t hurt to double check on
            c-diff. I just think it is worth double checking for things in case your GI missed something during your colonoscopy. My son tried the SCD diet for 2 weeks (not long enough I know, but the dynamics in our home re the restrictions placed on him meant it had to go). I even purchased adam’s book and bought Elain Gottshall’s book and the whole family started to try it with him and one night he said it is working, but the next day he decided not for him. So, take things slowly and don’t put all your eggs in one basket to begin with. Also, have you though about taking the probiotic at night? Lots of hugs to you also.

        • HEATHEN HOLIDAYApril 18, 2014 at 3:53 pm #

          Mary.. and Gail!

          Gail thank for the website on the girl with the Celica disease, I don’t have her symptoms, but it’s a good read and good info.

          Mary, I called the dreaded GI yesterday and spoke with the nurse about wanting to see if I had C-diff. She told me that on Monday, when I had my colonoscopy, that my entire colon would have been affected if I had C-diff and that they did not see an indication of that. What is your opinion on this? Is that what you were told as well?

        • HEATHEN HOLIDAYApril 18, 2014 at 4:05 pm #

          Ann!

          So good to hear that the SCD diet is working for you. I really think that sugar is one of our worst enemies. I am glad to hear you can handle eggs, too, because I am an egg aholic. I eat way more than 2 a day… probably not good for me to eat so many, but I love them.

          Are you on the Asacol HD? If you are reading this conversation, I was put on the new medicine APRISO a couple months ago around the corresponding time of this flare. My flare was a bad, but it got WAY WORSE when I started the Apriso, so I wasn’t really keeping good track or paid attention to this medication change. I blindly trusted my doctor when he told me to go from Asacol HD to Apriso.

          So, like I said above.. I am making myself a guinea pig. I switched 2 days ago from the Apriso BACK to the Asacol HD 800mg. I take 3 in the morning and 3 at night. Now, I am listening to Bev and others that Asacol itself still might be a problem as I have never been in remission on this stuff. However, last summer I was on it for a few months and I was going ok… at least super pencil thin somewhat formed stools and no blood or pain. I was on Asacol HD 800 at that time period last summer.

          So… it’s been 2 days now from the switch to Apriso to Asacol HD 800. I haven’t had the all totally liquid stools and my abdominal pain seems to be slightttllllly better. Not enough days yet, but I will continue to report to you guys what is going on with the switch back to Asacol HD from the Apriso. And again, this Asacol in itself still might just need to be trashed all together, but one thing at a time.

          The goal for many of us UCers, if not all of us, is to get off all these medications completely. Who wants to live co-dependent of these stinking hard to swallow pills all your life? But, if something is working for you, go for it. I definitely learned the lesson of tapering off medications slowly so your body can adjust. I have been known to quit things cold turkey and have really paid for it with insane withdrawal symptoms or triggering a flare.

          Now, there are some things on the SCD diet that are kinda of a grey area for me… like cheese. I think I need to stay away from dairy entirely, including yogurt. I don’t think I am lactose intolerant, but I am still unsure of what it really does to me. I have to find another way of getting fermented foods besides yogurt… like raw sauerkraut.. or something, but right now, I have to eat the super soft foods and try to steam as many of them as I can.

          • AnnApril 19, 2014 at 12:23 pm #

            Hi Heathen, I had to look at the bottle but yes it is Asacol HD 800 gm. I also take Canasa suppositories if I am feeling a little nervous about the colitis flare kicking in. I would say stay away from any foods you are not sure of. I am not sure if you are making your yogurt but most store stuff has sugar in it. I don’t want to make it so I just don’t have it at all. I like the bubbies sauerkraut I get at Whole Foods. I, like you, would like to get off of the Asacol altogether but being on it for me beats having a flare. I hope the Asacol can get things under control for you like it did for me along with the SCD. I also just started Yoga…I figured what the hell…it can’t hurt! ;) Cheers!

          • AnnApril 19, 2014 at 12:24 pm #

            oops…800 mg not gm…

  23. Johnny Drama
    Johhny DramaMarch 24, 2014 at 10:52 pm #

    GREAT ARTICLE!
    Thanks for sharing Adam!

  24. UC Family Boy
    UC Family BoyMarch 25, 2014 at 10:46 am #

    Hey Adam, Great little find here with that news.
    I had another look over it. I have always feared UC was genetic based, which kind of takes resolving UC out of our hands (and potentially life long). To see our Gut Flora becoming more and more the case of suspicion is encouraging.
    What I would like to add for everyone interested;

    Family Members tend to have IBD.
    My younger brother doesn’t have IBD, yet when I tested him as a possible FMT donor, he had similiar gut profile to me (though I lacked several key bifo bacterias). So, is this a matter of our immune having tolerance? Would an infection put him in a situation of not having the right balance to lend off IBD??
    What I know is, its less genes and more sharing bacteria that leads to similar gut flora. Another indication is couples who share the same flora, so IBD is more bacteria and less genes.
    But genes are key, however if we can’t stop the innate response as well as we see in UC, than is this due to an imbalance, or genes out of wack?
    Again, if they were out of wack than the inflammation would be constant, therefore its in my opinion more bacteria then genes that cause UC.

  25. LisaMarch 27, 2014 at 10:43 am #

    This is a very old article from 1924 and discusses what doctors found in a UC patient with streptococcal bacteria.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2201495/?page=1

  26. MarMarch 31, 2014 at 3:59 pm #

    http://www.myfoxorlando.com/story/23943890/ucf-qresearchers-closing-in-cure-for-crohns-disease

    Very interessting study too. Also here antibotics play a part in the treatment

  27. MarMarch 31, 2014 at 4:12 pm #

    From 2006, but linking to my previous post

    m.scotsman.com/news/uk/crohn-s-disease-vaccine-breakthrough-announced-1-725437

  28. MaryJune 7, 2014 at 4:29 am #

    My son went to see Prof Borody last week, who said , quite confidently, ulcerative colitis is caused by bacteria and I believe him! It is no coincidence that my son’s colitis improved when he recently took Cipro , he feels better when taking a strong probiotic, eliminates sugar etc. He said they are in the beginning stages of curing uc and currently his Centre cures 15% of uc patients. On average about 6 patients a week fly in from overseas (probably because the FDA has shut down FMT treatment for colitis patients). In my son’s case, he has put him on an antibiotic called Rifaximin (antimicrobial which targets the GI tract and not really absorbed by the body – a much safer antibiotic) as he doesn’t want him to flare whilst tapering off prednisone – down to 5 mg pred and he is doing well! He spent a good hour with us and he is devoted to his research and for the first time in 6 years we feel hopeful that we are on the right path. Also, he told us my son shoukd have been told to stop mezalazine as he said his body reacted to it (remember he developed low platelets and uc worsened) and was concerned he was on it for a number of years after he was diagnosed with low platelets. He wants FMT for my son in the future, but when the ‘pill’ form is ready. Also, doesn’t want him to take a higher group of medications, which was music to my ears!

    • bevJune 7, 2014 at 8:43 am #

      Mary!

      This is the BEST and most HOPEFUL news I have heard regarding UC EVER!!

      I too believe that bacteria (or loss of good bacteria) is the cause and that it CAN BE CURED. No doubt in my mind at all. I’ve been waiting for this…the medical community is going to have an extremely difficult time admitting all of this….will they?? I wonder.

      It pains me, however, to think of all of the people who have ended up with their colons removed due to the mistreatment of UC…ie: all of the meds (mesalamines, steroids, immune suppressors…ugh), which really only tend to worsen things leading to such an extreme measure as colon removal. Imagine when the medical community finally has to admit that they have absolutely bungled the treatment of UC all up! So very very sad…

      • MaryJune 7, 2014 at 3:12 pm #

        Hi Bev,,
        It was refreshing to speak to a gastroenterologist who has a different take on this disease, one who spends time , money (he funds some of the research himself) and energy in finding an answer not only to uc but Crohns etc. He said my son probably picked up the bacteria from the meat in a burger – he used to eat lots and not from the cleanest places either! He is not reckless in his treatments, but very cautious unlike the gastroes we have been to , who write script after script of toxic drugs, which in my son’s case caused many health problems for him. The antibiotic (he on a very low dose) he prescribed is not easy to get here and we had to have it made up at a compounding chemist. He was part of the team who discovered h pylori is a bacteria and the ulcers can be cured by antibiotics. He worked on and discovered the triple antibiotic treatment cure for this. He works alongside a small group of Gastroenterologists in the world who are working hard to find the right combination of treatment to kill the bacteria. He said we are at the beginning of curing and /or achieving long remissions and although rare, patients have no choice but to have their colons removed, but, in the future, hopefully, this will not be the case.
        No wonder the. SCD diet, probiotics, eliminating sugar and alcohol etc have given relief to many sufferers around the world. I say, beware of a doctor who says eat and drink whatever you like – science is beginning to prove them wrong!

        • bevJune 7, 2014 at 4:16 pm #

          Mary. I’ll bet it was refreshing to talk to this particular doctor. I can’t even imagine a gastro with such an open mind. He is really something…in a great way!!

          I still think that these people with UC who end up with no choice other than colon removal is because of the toxic treatments that often just exacerbate the condition until it is so far gone that there IS no other course of action. That is what makes me so sad.

          We all have to wonder just exactly what caused our individual UC, that’s for sure. There are so many things that could have caused it in each one of us.

          Cheers, and thank you for all the wonderful information. I will treasure it!!

          :)

    • WundererJune 8, 2014 at 7:27 am #

      Hi Mary,

      Thank you. Any idea when the ‘pill’ form will be available to us? I, too, believe it’s bacteria related. I recently killed a flare with oregano oil. I’m now in remission thank God, no meds. I’ll continue to take oregano oil for two weeks. I’m now doing more of a Low Fodmaps than SCD diet. A good quality brazilian bee propolis, a natural anti-inflammatory and antibiotic, along with Vit C, have helped further along with probiotics and lglutamine, a tip I took from Bev.

      • MaryJune 8, 2014 at 3:16 pm #

        Hi Wunderer,
        Very interesting wild oregano oil has helped put you into remission – more proof of bacteria in colitis! This also put my son into remission last year, but he couldn’t stand the taste, so stopped it and flared. But, he wasn’t taking Bev’s combo at that stage, so I think if he was taking a probiotic (take the probiotic 2 hrs apart from the oregano) as well he would have continued to be stable. He was put on a 40mg prednisine taper in March this year and the same week cipro for an infection and by the end of that week he felt fantastic, but as soon as cipro finished, he flared. His old gastro stupidly put him back up 40 mg pred from his taper which was at 20 mg and he continued to flare. Because he had the Prof Borody appointment, he started Bev’s combination to avoid having to try further meds and surprise, surprise solid, less bm’s, and after accupuncture (still goes weekly) cramps went. My son has an appointment in 7 Weeks at Borody’s Centre, so I will ask him then re the pill. I was expecting him to offer FMT for my son, so I was quite surprised when he said he will aim for a cure when the pill is ready. He mentioned this to my son’s GP in his thank you for referring letter (also sent a copy to my son) and I doubt she even knows what FMTs are let alone they are working on it in pill form!

        • Lynn WegeJuly 20, 2014 at 6:46 am #

          Hi Mary –

          Just checking to see how your sons appointment went with Dr. Borody and how’s he’s doing on his current protocol. And what the doctor had to say about the new pill he told you about coming out soon.

          Thanks,

          Lynn

          • MaryJuly 21, 2014 at 1:28 am #

            Hi Lynn, I hope all is well with your son. Regarding my son, he is doing very well. He was able to get off prednisone without another flare, which is thanks to the Rifaximin, a low dose non absorbable, antimicrobial antibiotic Prof Borody put him on. His next appointment at the Centre for Digestive Diseases is on 31st July. My son doesn’t want my husband or I to go with him, but I intend to give my son a list with questions and one of them will be regarding the FMT
            pill. He is swimming 1600 metres almost daily and trains at the gym if he can’t get to the pool. This is wonderful to see him like this . He is still taking 6mp (treatment from his old gastro) and I hope he will realise this drug does nothing for him. Supplements he is taking are l glutamine (1 scoop am and 2 scoops before bed, 1 astaxanthin and 1 probiotic.

          • MaryJuly 21, 2014 at 1:30 am #

            Also, he has gastric upsets from time to time and takes somac. I assume 6 mp is the culprit here as he had an endoscopy late last year, which was normal and the ulcer he developed from taking pentasa has disappeared.

    • EllaAugust 4, 2014 at 7:14 pm #

      Hello Mary, thank you for your post , very encouraging. My daughter has UC for 3 years, and she is on Remicaid. Not doing that well. Please tell us more about your experience with dr. Borody. Are you planning to start fecal transplant? Would you mind if we speak over the phone? It is hard to see how debilitating this disease is. My daughter was homeschooled for 6 month, because she had 10 stools , with blood and was very tired all the time. She ended up in the hospital. In addition, she developed psoriasis. Thank you for all.

      My phone (917)647-9555.

      • MaryAugust 5, 2014 at 7:55 am #

        Hi Ella,
        I can sympathise with the worry you feel about your daughter, but this site and the many helpful and caring people here, will help you and your daughter through the tough times.
        We have been told that colitis is bacterial. Right now my son takes a non-absorbable, antimicrobial antibiotic which targets the GI tract, called Rifaximin. He was able to taper off prednisone without going into a flare because of this antibiotic (I am not an advocate of antibiotics, but thank goodness for this one!). This is a long term treatment and has helped him greatly. We are waiting for the FMT pill, which my son was meant to ask about at his visit last week, but didn’t. He also takes l glutamine (1scoop am and 2 scoops pm), astaxanthin and a 200 billion antibiotic, follows a dairy/gluten free diet, watches his intake of sugar and alcohol and he feels great!!! He is still on 6 mp (his old gastro prescribed this over a year ago) which has never helped as he kept flaring .
        I think the world is lucky to have wonderful people like Prof Borody, who works with a small group of Gastroenterologists from around the world. Like others, he is dedicated to finding a cure and I believe it will happen sooner rather than later.
        In the meantime, watch for food allergies and get your daughter to follow a healthy diet (organic if possible) and thanks to Bev for sharing her success with l glutamine, astaxanthin and probiotic – I can’t praise these three supplements enough! My son says he feels the best he has felt in 7 years (when he was diagnosed).
        I am more than happy to speak to you, Ella as it is always helpful to share others experiences. I am going overseas for 3 weeks, but I will check this site, and if you have any questions, please don’t hesitate – we are all here to help each other through the stresses of ulcerative colitis.

        • LynnAugust 5, 2014 at 2:00 pm #

          Hi Mary & Ella –

          Oh Ella it’s a heart breaker when your child is so sick that they can’t enjoy life. My son is 20 years old and has UC. I cry at least once aday and had to quit my job to cook and care for him. He is a junior in college currently trying to finish up summer school. He and my husband and I were in the ER over the weekend where our son had a perirectal abscess. Talk about slaying a whale, it was pretty bad. Most recently this and pylinitol cyst and his appendix removed in the last 2 years since his diagnosis. Can’t help but think it’s all related. Currently he is gluten free/ dairy free and egg free and watching the sugar and no alcohol. He is taking some supplements but no meds only ADHD when he has to focus. I think the ADHD is also related to the unhealthy gut. He was diagnosed with ADHD about the same time the UC symptoms surfaced. The weekend experience has set his healing back a few steps but he’s trying to get back on track. Find a good functional nutritionist and take the guess work out of things. They are wonderful! Mary is your son going to be on Rifaximin as a long term treatment? Just curious why is he still taking 6mp if it’s not working? I was waiting for an update to see if the doctor knew a date when the FMT pill would be out. Does anyone have an update on this pill? One concern I have as our son seems to be healing and moving forward he starts to let his guard down. He’s better (don’t get me wrong he does have a lot of healing to do) and maybe doesn’t watch diet as he should we talk about this a lot. Any ideas suggestions to help others prevent going down this road? It’s a lonely situation for our son as his peers don’t understand what he is going through. The college life is one of drinking alcohol and eating a lot of not so good food for you. He feels isolated and different. He has a few good friends and does go out when he feels well. Glad to hear your son is doing well Mary and the best to you Ella. Tackling this UC is a process, definitely not a quick fix by any means. I don’t mean to discourage you but encourage you. You sound like a great mom and there will better days.

          • EllaAugust 5, 2014 at 5:53 pm #

            Thank you Lynn, for your story and encouragement as well! We are all together in search for cure. I really hope your son feels better, and you are a great mom! God bless you all.

        • EllaAugust 5, 2014 at 5:48 pm #

          Hi Mary,
          Thank you for the respond and hope! I think all of us need hope, because we don.t get one from treatment protocol that available today in mainstreem aproach.
          I started probiotics, but in very low dose. Will increase slowly. Will implement L-glutamen, and asthaxantin as well.
          I tried to get FMT pills , here in NY, but couldn’t. It is not approved by FDA. May be I should of fly to Sidney, but my daughter is unstable, flares.
          Did you supply Dr.Borody with donor for FMT pills?

          Please keep us posted on your story. Its encouraging.
          Thank you for all.

          • MaryAugust 5, 2014 at 7:44 pm #

            Hi Ella,
            Never give up in helping your daughter! I believe you are on the right track with the supplements. Regarding the probiotic, Bev uses Ultimate flora critical care (from memory, I may have the name wrong) 50 billion which is a slow release capsule and therefore makes its way to the colon.
            I know prof borody takes patients from overseas and there is a dedicated line when phoning the Centre re this. Regarding the fmt pill, no donor necessary (from what I believe). The pill is not available yet and my son’s next appointment is in January and this time I will definitely go with my son. I do notice the difference with his old gastros and prof borody with their way of treating uc and I feel the others do not know and simply follow the current protocol, which for some it doesn’t work.

            Hi Lynn,
            I wish I had more information to give you. I feel if bad bacteria is targeted, then you are more than likely going to see some improvement. Probiotics taken in an empty stomach first thing in the morning is essential.
            My son is a medical student and refuses to stop 6 mp as all the Gastroenterologists he talks to say he shouldn’t change a thing. Hopefully in January, we can convince him otherwise through prof Borody. Prof Borody did say he won’t put him on any other medications, which satisfied me. I hope your son reaches full remission soon. I do find my child has a mind of his own and refuses to talk about his uc. I haven’t cried for a few months, but I have cried everyday for years – it released the stress I felt. All the very best to you and your son.

            Ella and Lynn, you are clever, loving mothers.

          • bevAugust 5, 2014 at 9:38 pm #

            Yes, Mary is correct! That is the probiotic…ULTIMATE FLORA CRITICAL CARE by RENEWLIFE…50 billion.

        • EllaSeptember 30, 2014 at 9:31 am #

          Hello dearest Mary,
          After your notes I was so inspired that I decided to get in touch with dr Borody . He believes that UC is not an autoimmune disease but bacterial in origin. He advised to start Rifaximin 550 mg twice daily together with Metronidazole 250 mg twice daily, for my 16 y/o daughter. Currently she is on Remicaid, and still has 6 BMs in the morning and 4 during the day.
          However, I am a little scared to put her on so many antibiotics. Dr Borody suggests to take them until she develops formed stools 1-2 times per day. How long is your sun on antibiotics and what is his dose?
          My daughter is taking only 30 BLNS probiotics per day, can’t take more. Please, tell me, are you giving probiotics apart from antibiotics?
          Thank you for all!!!!

  29. MaryJune 7, 2014 at 8:00 pm #

    Prednisone side effect is over for the moment. He had lunch an hour ago and has just gone out for the day. He feels 100% . This boy was in a shocking state earlier this morning and couldn’t even keep his breakfast down, let alone go out. I hope he never takes prednisone again!

  30. bevJune 7, 2014 at 9:54 pm #

    Thank you Mary. You don’t know what that means to me. I too like to share my good fortune with others and always hope that it will truly work for everyone…so deeply happy that it helped your son in some way!!!

    A fab weekend to you as well:)

  31. WundererJune 9, 2014 at 2:59 am #

    Mary, hope your son continues to feel better. The program he’s on is great to be working! Let us know how he goes. I’m sorry to hear about the bad experience with meds, in fact I got side effects from just hydrocortisone and have not taken another med since.

    I have flared, precipitated by red meat once, avocado another time (all safe foods on the diets which is why blindly following anything doesn’t work). I believe these really created an environment for and strengthened already existing bad bacteria and leaky gut, people have different triggers. One time I controlled with diet but when the bleeding got scary the second flare and I got a urinary tract infection as well, the oregano oil and evo killed it in one day! The urinary infection gradually went away in a week. I’m doing well on Low Fodmaps with SCD wisdom and yogurt, plus coffee (which contains caffeic acid) and a food diary. A month or so of SCD can clear the field and then reintroducing Low Fodmaps helpful carbs. I discovered Psyllium seed was helping, so now I’m taking oatmeal for fibre and it’s helping. That’s working and yeah the astaxanthin and lglutamine. People may have different protocols and should not blindly follow anything, but these would definitely help: probiotics, astaxanthin and lglutamine. And Vit D of course.

    Let us know how you go! Wishing you well. Prof Brody is the best man to sort this out.

    • MaryJune 9, 2014 at 7:22 am #

      Thank you Wunderer. The prednisone taper (down to 5 mg since last Saturday) is awful. He was so ill Sunday morning and a couple hours later back to normal. Then awake vomiting and nauseous from 1am until 4.30 am Monday and decided to take his 5 mg dose at 4.30 am (3 hours early) just so he could sleep. This evening the discomfort started earlier and i don’t know how I can help him. Apart from this, he feels pretty good. He is also on 6 mp 50mg one day 75 the other and it has done nothing for him. I feel he is in good hands with Prof Borody and I know he will get him off this drug (his previous gastro only believes in medication – he said my son could eat and drink whatever he liked and he did, which gave him severe flares. Now he has realised that rice, potatoes, gluten, dairy, alcohol, soft drinks, sugar are triggers for him.

      .The oregano is amazing! My daughter was ill last week with an infection and tried oregano whilst waiting for her blood test results due the next day and she didn’t even try the augmentin prescribed because she was a lot better and 100% by day 3 – my other daughter developed the same thing and oregano worked for her too. My husband had shingles and it fixed that too.

      Thank you for your thoughts and I wish you continued perfect health too!

      • WundererJune 10, 2014 at 6:04 am #

        Mary, hope your son begins to feel much better. Prof Brody is definitely one of the best doctors.

        Glad to hear about oregano oil for so many conditions, nature is often under appreciated! Thank you for such precious thoughts and hope you have a great day.

        • Mary beiglariJune 10, 2014 at 10:42 pm #

          Hi Wunderer, my son has had 2 good nights in a row and feels he is over the drop from 10mg to 5mg – he will drop the 5mg at the end of this week…. Ugh! At least the discomfort will pass! Overall, he feels very good :)

  32. LynnJune 11, 2014 at 7:49 am #

    Just curious what is your protocol for taking oregano oil? And how does one go about making an appointment with Dr. Borody?

  33. MaryJune 11, 2014 at 8:39 am #

    Hi Lynn, Prof Borody’s Centre for Digestive Diseases is in Sydney, Australia. We live in Sydney, but when I phoned, I noticed there is an option for international callers.
    Regarding wild oregano oil, I stumbled across it whilst looking for relief for my son who was in a flare and the meds were not helping. He mixed 4 drops in diluted juice and added a tablespoon manuka honey. This worked very well and put him into remission, but the taste was a problem, so he discontinued it and flared not long after.

    • LynnJune 11, 2014 at 8:52 am #

      Hi Mary –

      How wonderful you live in Australia and have Dr. Borody in your backyard! My son is 20 and just finished his sophomore year of college. We have been to about 20 doctors with varying degrees and no remission yet. It’s been 2 years since his diagnosis. We have our daughters wedding in a week and can’t help but be concerned with our son and having to “go” that day. I think we may give the oregano oil a try. Now how often and how long until he went into remission? Thanks.

      • AnnJune 11, 2014 at 9:02 am #

        Hi Lynn and all commenting on the use of oregano oil. I have recently started using doTerra Oils to help put me and keep me remission. Still using Asacol HD though. If you are trying to find a way to swallow the oregano oil, doTerra has vegetable caps you can fill with oil yourself. I have not yet tried this but wanted all who are interested to know about the capsules. I am trying the GX assist, PB assist and Zendocrine cleanse. I am not quite sure how much it is helping yet because I have just started the protocol but for those of you interested in killing the bad bacteria and replacing the good bacteria in your gut this might be something worth looking into. There is information about it on the web. Hope this helps someone, including me! Best! :)

        • JackieSeptember 8, 2014 at 6:51 am #

          Hi Ann,
          Have you had any luck with the doTerra Oils/GX & PB Assist? My husband is currently being treated for Crohn’s, and is also using Asacol. We recently came across doTERRA, and I’ve been trying to find more information/testimonials for those that have had luck with the doTERRA products and their Crohn’s/UC. Any insight or feedback would be greatly appreciated :)

          • AnnSeptember 8, 2014 at 9:03 am #

            Hi Jackie, I have tried the doTerra cleanse. The first two months using the GX assist for 10 days then PB assist for 10 days and 10 days off seemed to not hurt the colitis so I assumed it to help. The third month of the cleanse was to take the zendocrine caps at breakfast and lunch and zendocrine oil on my feet at night. It gave me some sort of indigestion and my colitis did flare not long after taking it. I am not sure if it was coincidental or not but the flare went away for the most part when I stopped the Zendocrine. I am finding my best luck with the SCD combined with the asacol hd keeps me in the best remission I have had in years. I still use many of the doTerra oils and have recently started back to taking the MSM which is sulfur. I have learned the three most important things our body needs are water, salt and sulfur in order for them to be in optimal form. It is a constant learning curve but my efforts seem to be paying off. I hope this helps. Ann

      • MaryJune 11, 2014 at 1:07 pm #

        Hi Lynn, my son is 22 and has had this dreadful disease since he was diagnosed at 16 with proctitis (early last year that changed to pan colitis).
        The cramping stopped and bm’s became solid after 2 days of taking the oregano oil. The change in his condition was quite remarkable! We travelled to the States shortly after to spend Christmas with relatives and he simply gave up on it and refuses to take it now.

        Right now apart from 6mp (this has done absolutely nothing for him), and final 5mg of prednisone (again useless) – both were prescribed by his previous gastroenterologist, he is taking l glutamine, astaxanthin, 200 billion probiotic and an antibiotic which Prof Borody has put him on (it is a non-absorbable antimicrobial targeting the GI
        tract) and so far he is doing well, apart from side effects from prednisone taper. Also, he has accupuncture once a week, which he feels has
        helped to relax his stomach.

        Also, if he chooses l glutamine, 4 scoops (2 am and 2 pm) helped tremendously and then drop when colitis settles to 2 scoops and 2 astaxanthin pills initially as well. Bev, is the expert regarding these though. Also, take the probiotic 2 hours apart from oregano oil.

        I sincerely hope your son finds some relief and you all enjoy your daughter’s wedding.

  34. LynnJune 11, 2014 at 1:20 pm #

    Hi Mary –

    Sounds like we have a lot in common. How often during the day did your son take the 4 drops of oregano oil, honey and diluted juice? One twice three times a day? I understand to take it away from the probiotic. Thanks. Lynn

    • MaryJune 11, 2014 at 4:40 pm #

      Hi Lynn, he only took it once after lunch – he was at home studying for exams at the time, so it was easy to manage it in the afternoon. But, anytime throughout the day should be fine – even just before bed might be better. By the way manuka honey was in the drink for two reasons – antibacterial and to help with the taste. There is another post (Wunderer) on this thread who has achieved remission with the help of oregano oil, which would be good to find out their protocol re oregano oil.

  35. LynnJune 11, 2014 at 5:21 pm #

    Hi Mary –

    Thanks for answering my questions and thanks for the well wishes regarding the wedding. As I said our sons have a lot in common – age, pan colitis, no success with 6mp or other meds, prednisone struggles and I’m sure other things that this age and dealing with this UC have putting a big drag on their lives and the family. Our son stopped 6mp in April and started a protocol suggested by a local NP. She comes highly recommended but I don’t think she knows what to do with him having loose stools 10 times aday! He’s drinking this tea that tastes like weed whiskey if you know what that is in Australia. Then the typical prebiotic and probiotics and a bunch of herbs, ground chia seeds and an anti-fungal diet. We’ve tried many many angles. Thanks again. Will let you know how things go and keep all of us informed when the pill comes put.

    • MaryJune 11, 2014 at 6:19 pm #

      Hi Lynn,
      Our sons definitely have a lot in common and I hope your son responds well to the oregano, as my son did. If you are able to find it in capsule form or do as Ann has suggested, then that may be a better approach. My son can’t stand the taste of many things now which he has tried over the years for relief, such as aloe vera, slippery elm, oregano oil, ginger, olive leaf extract, even evoo and mint tea, because it reminds him of how ill he was, which I understand. He doesn’t mind anything in pill form though! Yes, please keep us updated on your son’s progress and I will ask re the pill at my son’s appointment in July.

  36. UC Family Boy
    UC family boyJuly 28, 2014 at 5:19 am #

    Them god dame bugs!!
    I think it’s easier to proof with CD as we are dealing with deep tissue invasion. With UC there appears more control and therefore harder to prove but I still feel like most of you out there, it’s the bacteria.
    Maybe type of bacteria, percent of bacteria determine CD or UC. either way we can focus on the real issue.
    For now, we must eat and drink well…the rest will follow

  37. HEATHEN HOLIDAYAugust 5, 2014 at 9:54 pm #

    Hi all,

    I just wanted to update you all as I went back and read my previous posts on this thread when I was in super-flare mode this past spring. A few quick things I want to mention now being the first of August…

    I am not currently flaring and doing much better since I last posted on this thread.

    Currently on 2 Asacol 800 HD (was on 4 a day) and 20mg of Prednisone (was on 40mg) and Percocets (3-4 a day). I am feeling a (physical, not mental) addiction to the Percocets and am currently trying to taper down and ween off them, as well as the Prednisone and the Asacol. I now have about ohhhhhh … 3-5 bathroom trips in a 24 hour period as compared to 8-15. A few accidents here and there, but for the most part on a scale from 1-10 I would say I am about a 5 with 10 being, “I want to die now please” on the symptom scale.

    A couple things I learned…. the GI did not initially put me on a high dose of Prednisone long enough to get me out of that flare. He was doing a week, then taper the next week by 5mg, etc. Glad I didn’t listen to him, as usual, and got back on the high dose and stayed on it until I stopped bleeding AND THEN started tapering down (from 40-20mg pred). My conclusion with this is that if you feel that the Prednisone isn’t working for you any more, it MIGHT be that you’re not on it long enough. It took me some time, a few weeks at least to kick in. And, as far as tapering down.. slow, slow… slowwwww. I think I might even have to do 1mg at a time when I get down to 15mg. It takes your body time to adjust to the different levels of this drug.

    I’m with Bev on this Asacol thing…. well, most things, but I am not quite at her point yet! Love you Bev! I have reduced down from 4 a day to 2 a day and am going to try to get off these Asacol completely. I don’t think they do a thing and might be even causing some sort of damage, so why take them if Prednisone is doing all the work? This will be a guinea pig experiment with me, so stay tuned if you’re interested. I have been on Asacol since 2005 when I was initially diagnosed with UC.

    For the people who hate Prednisone… yeah, yeah, yeah… it sucks, but what drug is perfect? NONE of them. In my opinion, I would rather deal with Prednisone than Remicade or 6mp which almost killed me. Those drugs, and others like them, again, in my own opinion and experience, are FAR more dangerous and horrible than the dreaded Pred. My goal is to get off all drugs, period and save my colon.

    Warning!!! Almost every GI doctor I have seen tries to tell me that (super cheap and effective) Prednisone is worse than the (super expensive and dangerous) designer biologic drugs. Get my point here? They aren’t making money with you on Prednisone, they want you on the expensive crap that doesn’t work. (At least they didn’t work for me, at all and in fact, made me worse!) Do not be afraid to not trust your doctor. In fact, not trusting your GI, might save your life.

    One thing I noticed another thing that ‘might’ be a contributor to that flare from hell I had this Spring… I was eating a TON of dried fruit. I mean, prunes, dates, apples, apricots, raisins, mango…. and, stopped it all when finally I got fed up and stopped caring and stresssssssssinggggg…. and so I went to McDonald’s and got a hamburger. Yum, yum, hadn’t had bread or junk food for quite some time! Well, since that “fed up day” I have been eating bad things… baadddd things… but it got me out of the flare. I literally freaked out that day and stopped all my supplements, and went and got a bunch of junk to eat and got off my computer and stopped stressing about this disease and started watching fashion shows (fashion junkie here) and eating whatever I felt like instead. (Moral of this part of the story… I stopped stressing about fixing my flare and just said, “F!@# IT” and things got better. STRESS IS A FACTOR in IBD.)

    Then…

    I noticed when I had a bunch of raisins a couple weeks ago, the next day, I was running to the bathroom 10 times. So, that dried fruit issue might be a big NO NO NOOOO for me. That might be what sent me into super flare in February and I am too scared to eat any more dried fruit after that raisin episode. I am telling you, I was eating so much dried fruit before that last flare and just stopped and I got out of it!

    I still don’t drink enough water, I am totally addicted to coconut water and coffee. I have been eating some grains and dairy, which I don’t normally do. But, I am doing so much better now since the spring flare and do hope that any of my ideas or experiences might help some of you, like you have helped me. Thank ADAM for this site!!!!

    Focus on what makes you happy in between trying to figure out how to deal with this disease, it helped me immensely. I’ll keep you updated….

    xoxoxo, HH

    • MaryAugust 5, 2014 at 11:58 pm #

      Hi Heathen,
      It is good to hear that you are not flaring! Also, regarding the dried fruit, it can contain dangerously high levels of sulfites and asacol Contains sulphate. You could well be allergic to this group. I connected this to my son’s flaring and as soon as he stopped pentasa 18 months ago, the bm’s went from 20+ A day down to 6-8 and he felt a lot better – not perfect, but he got his life back. Most wines contain sulfites as do soft drinks.
      I am really happy for you and also that you can enjoy your summer with your little boy.

      • HEATHEN HOLIDAYAugust 6, 2014 at 5:39 am #

        Ahhhh MARY!!!!! You are a genius! I will stop the ASACOL tomorrow totally. Are there sulfites in antibiotics or any other meds that we take besides Asacol? Is this the same as the “sulfa” drugs? Because I remember some “sulfa” drug that I had a bad reaction to a few years ago… can’t remember what it was, or what it was prescribed for, just remember the “sulfa” part.

        THANK YOU, I will keep you posted! Big hugs to you… xoxo, HH

        PS. I hope I didn’t type and jinx myself by typing I was feeling better… had a couple mucus BM’s the past few hours. YIKES.

        • MaryAugust 6, 2014 at 3:10 pm #

          Hi Heathen, smart move to stop the Asacol. As you said, don’t stress about anything, not even the tiny bit of mucus. I have pieced my son’s health puzzle together through reading about people’s experiences – I find they are far more intelligent than some of the gastros out there ! Prof Borody (who is quite different than the gastros I have met) concluded my son is allergic to mesalamine after reading his records and he should have stopped taking the drug years ago!
          I have read that some antibiotics contain sulphate, Bactrim being one of them.
          Stay positive!

          • MaryAugust 6, 2014 at 3:24 pm #

            Also, Heathen, good idea to taper off Prednisoone slowly. As my son was on prednisone when he had his initial visit with Prof Borody, he was concerned that he would flare after he tapered to 15mg. He prescribed Rifaximin (antibiotic) as a way around this, which worked. Just a thought, you may want to consider oil of oregano as a natural antibiotic during your taper (along with a 50 billion plus probiotic)

          • EllaSeptember 30, 2014 at 9:38 am #

            Hello dearest Mary,
            After your notes I was so inspired that I decided to get in touch with dr Borody . He believes that UC is not an autoimmune disease but bacterial in origin. He advised to start Rifaximin 550 mg twice daily together with Metronidazole 250 mg twice daily, for my 16 y/o daughter. Currently she is on Remicaid, and still has 6 BMs in the morning and 4 during the day.
            However, I am a little scared to put her on so many antibiotics. Dr Borody suggests to take them until she develops formed stools 1-2 times per day. How long is your sun on antibiotics and what is his dose?
            My daughter is taking only 30 BLNS probiotics per day, can’t take more. Please, tell me, are you giving probiotics apart from antibiotics?
            Thank you for all!!!!

          • MarySeptember 30, 2014 at 2:42 pm #

            Hello Ella,

            I am very pleased your daughter is in Dr Borody’s capable hands! He has turned my son’s life around and he is now enjoying excellent health and is an active 23 year old living life to the fullest – he swims 2000 metres almost daily and has just started yoga classes as well! He looks great and is very happy!
            My son has been through the colitis roller coaster the past 7 years and since dr Borody prescribed Rifaximin in May this year, my son has been able to taper off prednisone without going into a flare and every week started to feel so much better. In June this year my son had an appointment with his old gastro and I insisted on accompanying him. It was lovely to sit there and here my son say he is feeling great since starting the Rifaximin as 2 months earlier my son was in such a bad flare and his old gastro wanted to hook him up to corticosteroid iv for 5 days in hospital and then start him on a clinical trial (I forget the name of the drug) with a drug with all sorts of side effects.
            He was put on 50mg 6mp in March 2013 and on the same day started l glutamine, astaxanthin and vsl #3,. He was also on Pentasa 4mg which we now know he is allergic to and not only worsened his colitis from proctitis to pan colitis, but gave him all sorts of side effects. Two weeks after starting 6 mp a blood result showed he could go into renal failure and the pentasa was stopped immediately – he started to feel so much better and levels returned to normal. One of the first things Dr Borody said to us is that he should have stopped Mesalazine years earlier as he is allergic to it – why didn’t his other gastro see this!
            My son stopped the supplements in August 2013 , thinking 6 mp had made him better and went into a nasty flare, which became another roller coaster ride of prednisone and trying accupuncture (which did seem to help), oregano oil (great, but read not to take continuously). Anyway, my son takes a scoop of l glutamine, 1 astaxanthin, 50 mg 6 mp (which is still in the mix, but has proven to be useless) and 50mg Rifaximin daily. He used to take 200 billion probiotic which we bought from the compounding chemist, but has since stopped taking it as my son decided he doesn’t believe in probiotics – frustrating when he decides to do these things!

            He said 2 nights ago, he is no longer sick, eats whatever he likes except dairy – he had been gluten free for many years and is now enjoying croissants, bread etc!
            He eats a high fibre diet and we eat organic vegetables/fruit and meat at home. I believe he should take the probiotic, but I have to leave it up to him.
            As my son’s experience has shown, it could be Dr Borody has it right, colitis is bacteria, not autoimmune.
            Ella and Lynn, I hope your chikdren start to feel better soon. Lots of love, mary

    • bevAugust 6, 2014 at 8:55 am #

      LOVE YOU TOO, Heathen!! I am thrilled that your nasty flare has subsided!!! How great is that, huh?!

      I say…get off the asacol totally…don’t be afraid…believe me…it is doing NOTHING for your UC. I don’t care what any doctor tells us. It is all about MONEY, like you said. Asacol is one of those drugs (unlike pred) that you can actually stop cold turkey. I did and never looked back. I used to not tell people to just stop taking a med, but with asacol, I really think that you can just stop taking it!

      My two cents :)

      • HEATHEN HOLIDAYAugust 7, 2014 at 8:23 am #

        Yeah, I can’t believe how many people complain about their GI doctors. It’s a conspiracy, I tell ya! Follow the money trail and you’ll find out who is in control and what the real motive (truth) is. It’s all about the $$! The GI doctors do not give a @#I*# about your health. If you find one that does; that actually listens to your symptoms and complaints, let me know.

      • MarySeptember 30, 2014 at 3:53 pm #

        Ella, I meant to type 500mg Rifaximin twice a day. This is a long term treatment for my son until Dr Borody has the FMT pill available. He sees Borody again in January. He still sees his old gastro because he is the one who put him on 6 mp and he still needs monitoring for this.

    • AdamAugust 7, 2014 at 1:50 am #

      Yeah to you Heathen for gettting stuff under control!!!! YIPPERIFFIC!!!:)

      • HEATHEN HOLIDAYAugust 7, 2014 at 8:24 am #

        Thanks Adam, YOU RULE! Big hugs for you doing this site, you have no idea how much you are appreciated.

  38. LynnSeptember 30, 2014 at 11:37 am #

    Hi Ella and Mary –

    Wasn’t able to get a hold of Dr. Borody as on his website says closed to people outside of Australia. Not sure where you live Ella but great to hear he is helping you.

    My integrative doctor is good at prescribing stuff if we need but the antibiotic mentioned here is about $1000.00 in the states and that is for 14 days!

    If you know a contact for him for a loophole here for the meds I’d like to know.

    Thanks,

    Lynn

    • MarySeptember 30, 2014 at 2:58 pm #

      Hi Lynn, the antibiotic is from a compounding chemist in Sydney and you will need a script from Dr Borody. It works out to $100 for a month’s supply. $2000 per month is an obscene amount to pay for an antibiotic, particularly as it has been around for a long time.

  39. EllaSeptember 30, 2014 at 1:37 pm #

    Hello Lynn,
    Ther was a conference in August in US, and my pediatric gastro met him. This is how i find out about the protocol. We didn’t started it yet.
    Don’ t give up, make an appointment with dr Borody and fly to Australia, iam sure he will not refuse. The only problem could be is to wait for the appointment. I think we will take that road, because its scary to treat a child just by the protocol, I rather meet him myself!

    • MarySeptember 30, 2014 at 4:17 pm #

      Lynn and Ella, Prof Borody is probably in contact with Gastroenterologists in the States. He did mention he sees at least 6 patients from overseas each week, so you could see him initially. Failing that (there is a long waiting list), you could ring his clinic in Sydney and see whether you could get the name of a gastroenterologist with similar thoughts re ulcerative colitis.

      • LynnOctober 1, 2014 at 5:12 pm #

        Mary –

        Glad to hear your son is well and enjoying life. My sons first experience with his GI problems started when he was 11 years old. He was diagnosed with CD but the pediatric GI doctor didn’t know for sure. Prescribed him asacol. We walked out of the clinic and he never took the meds. I instilled diet and probiotics and he went into remission within the year. Then he was in remission for about 6 years. At first good about the diet then as he got older and driving let his guard down and hit the glass wall (a term on another blog). He was a teen and invincible. Ate and drank what he wanted. Well my husband and I knew it was a matter of time. And it happened. He’s been symptomatic with UC for three years now. A positive is he’s learning a lot about his body at a young age. We talk about the glass wall and what he is going to do when he reaches remission. He can not go back to the old ways. Don’t kid yourself. Your son sounds like a wonderful person and sounds very independent. Hoping he won’t go too far out on a limb. It’s a scary road, you just don’t know how much you can change.

        • MaryOctober 2, 2014 at 1:14 am #

          Hi Lynn,
          Thank you for your message and I hear you! My son is a really good person and extremely independent. When he was flaring, he couldn’t handle gluten, dairy, coffee, alcohol etc. Now, he feels great, he has decided to see what his body can tolerate. This all came about the day my husband and I left for a month long trip to Europe – he stopped the probiotics, introduced gluten, chips, alcohol and goodness knows what else! My son and I have just returned from a cafe and he ordered a large bowl of french fries – this makes me very nervous, but I am unable to do anything about it!
          I am hoping and praying that Rifaximin is sorting out the bad bacteria and his body is healing. I am also hoping his good bacteria is being helped by the healthy food he eats. But, your message has prompted me to have a gentle word regarding my son’s diet to him.
          I hope your son finds remission very, very soon and I agree there are positives to this illness – a healthy diet (minus the latest inclusions) being one of them!

  40. MaryOctober 12, 2014 at 7:50 pm #

    Just read about a trial with the FMT Pill in the ‘Sydney Morning Herald, dated 13th October 2014. The study involved 20 clostridium difficile colitis patients and yielded a success rate of 90% with no sign of relapse during the 2 month study. Patients were given 15 pills over a period of two days of specially prepared fecal matter from healthy donors. 14 responded immediately and 4 needed the treatment again a week later. The trial was conducted in Boston under Dr Elizabeth Hohmann. I believe this article appeared in the Washington Post also. The article goes on to say this approach is a new wave of therapy designed to restore normal gut bacteria in people with a wide range of ailments.
    Taking a pill is certainly a much easier approach than FMT transplants and hopefully this will provide ulcerative colitis patients with another option in the very near future!

    • BevOctober 13, 2014 at 3:13 pm #

      Boy, this is encouraging and exciting news! Better times are ahead for all of us….

      :)

  41. EllaOctober 12, 2014 at 9:11 pm #

    Mary , thank you for an update and a great news! Your comments always full of hope. First pill was made by dr. lui from Canada 2 years ago , he treated Cdiff patients with it successfully. And he tx UC with it. Since its not approved , he can’t publish the results. I contacted him as well, and his secretary said that its all experimental. However, my daughter can’t wait, we ran out of time.
    Starting antibiotics in 4 days. Hope it will work! Will keep you posted, and thank you for all.

    • MaryOctober 13, 2014 at 6:50 am #

      Hi Ella,
      I wish your daughter every success with the antibiotics. Ella, you are an amazing mother and I know what you have gone through. It is difficult to sleep and even function when a child is ill and the fact that you have been searching and ringing doctors all over the place and not given up shows your love and determination. Both your daughter and you need a positive outcome and I hope this is the answer.

Leave a Reply