Natural TNF Blockers … the Missing Piece for Remission?

Lauren K fIntro:

Hi. I’m Lauren. I’m 36 years old. I’m a stay-at-home wife and mom. I have 2 wonderful young kids (ages 5 and 2). I’m blessed with a supportive husband and family.

Some more about me:

I’m a former elementary teacher. I love life. I have a great family; wonderful friends; keep strong in my faith. I enjoy planning parties; I love the beach; and I once loved running, exercising and being outdoors – but I’m very limited now.

Symptoms:

Presently, I’ve just lost over 15lbs in 3 weeks. I was hit with a stomach virus and recovered from the virus – but now my UC is quite vicious. I’m scheduled to start Humira next week – but starting to second guess. I find it difficult to rest and take ALL necessary steps to healing naturally when I have 2 young kids to care for at home. I love the natural approach – but having young kids to care for has been a game-changer for me. I NEED to be better fast to care for them. They basically have been living with family members for the past 2 weeks as I try to rest- but my symptoms are getting worse: massive weight loss, unbelievable urgency (had several “accidents”), losing so much “fluid” – no formed stool AND quite a bit of blood. ugh. – and of course… pain.

Natural TNF Blockers … the Missing Piece for Remission?

Diagnosed with IBS in 2004. In 2007, re-diagnosed with pancolitis UC. I struggled and couldn’t get remission on Asacol, Prednisone, etc… I was blessed with REMISSION in 2009 during my pregnancy and for several months post-pregnancy. However, I had a major flare in 2010 when my son was 9 mos old. I was hospitalized and started Remicade. After an allergic reaction to my first dose of Remicade, I stopped the Remicade. I took Canasa, Lialda, and periodically Prednisone – none of which kept me in remission. I had a few good weeks or 3 months (at most) of relief and just kept “functioning” but never thriving. I kept the edge off the disease by diet, supplements, etc… but never attained full remission. I hoped for remission with my second pregnancy (as I experienced in my first pregnancy) but was not so blessed. For the past 4 years, I’ve managed to lead a normal life (but with inconveniences). However, I’m often anemic a nd running on about 60% or less energy level from the drain of this disease. At the end of the summer, I faced a major setback began and now things are spiraling out of control (as I mentioned above).

I’ve tried the natural and homeopathic approach: Maker’s Diet (modified – as I can’t tolerate Kefir); SCD diet (though probably not long enough); fasting, Aloe Vera, Inflammacore, Arbonne (pea based shakes), NAKED green and GREEN GOODNESS / Bolthouse Farms drinks (definitely help!), Garden of Life products, etc… All of these things HELP and have kept me functioning for years. However, nothing has brought complete remission.

So, now I’m faced with giving a Humira a try (which scares me). My hope is to be on it short-term and achieve remission and then maintain naturally after coming off Humira in less than a year.

OR, don’t start Humira and consider giving this last natural thing a try… After researching, it seems odd that I can’t stop bleeding and attain remission on the natural paths I’ve tried. I thought about the fact that TNF blockers may be the missing piece. Humira and other biologics block TNF. I’ve never approached targeting TNF naturally and full force (while combining Ulcerin I and II by Dr. Verma) AND following a modified Maker’s/ SCD diet.

I’m wondering if anyone has thought about this before and given it a try? Here’s a list of natural TNF blockers: Tumeric/ Curcumin; Milk Thistle; Stinging nettle leaf extract; Fish Oil / Omega 3’s; CoQ10; Green Tea / EGCG; Vitamin E / Alpha Tocopheral; Magnesium; Tart Cherry Juice; Ashwagandha

Clearly, consuming ALL of the above would be too much on a very sensitive system. However, maybe incorporating quite a few of the above while following SCD and using Ulcerin Compound I & II might prove successful.

Has anyone tried anything similar? Has anyone thought about the concept of natural TNF blockers before?

Do I start Humira Tuesday or put it off and give this last approach a try?

written by Lauren K

submitted in the colitis venting area




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18 Responses to Natural TNF Blockers … the Missing Piece for Remission?

  1. John Noble October 7, 2014 at 1:31 pm #

    Hi Lauren,
    Since you are clearly open to more natural methods, have you considered doing fecal transplants at home?

    I’ve had UC since Jan 2007. I’m now 41.
    Worst flare yet starting Aug 2013.
    Doc was presenting recommendations of biologics as well, but I really really did not want to do that unless I had no choice.
    I was taking low dose of prednisone and azathioprine, then started the transplants using my wife as a donor. Went into the fastest remission ever.
    Started helminths in Dec 2013, human whip worm.
    Had a flex sig scope June 2014, Doc said she would would not be able to tell I had UC without knowing my history.
    Still taking low dose of azathioprine.
    We have 3 kids, 3 year old and twins born in Jan 2014 so I know your pain.

    Also, read this book: “An Epidemic of Absence”

    If you want more details or some personal encouragement, feel free to contact me directly I would love to help!
    -John

    • Andy October 7, 2014 at 4:50 pm #

      Hey John

      I’d like to get in touch about the worms. How can I reach you?

      Cheers Andy

      • John Noble October 7, 2014 at 5:33 pm #

        @Andy
        Hi Andy,
        You can reach me at
        gaxunil at gmail dot com

        • Paula Duncan November 25, 2014 at 8:18 am #

          Hi John

          Ive just read a few posts here as I myself have been a past sufferer of Ulcerative Colitis. More recently I just wanted to let you know that I am no longer on any meds and im taking OLIVE LEAF EXTRACT including supplementing my diet by taking probiotics as aswell. Im eating normally. No cutting out of foods but I do tend to stay away from spicy foods just in case.(Parden the next few words as not an easy subject to talk about over the internet) Im not suffering the gas or the bloating, my stools are well formed, no mucus or blood, no urgency to find the next toilet (im sure you understand). My energy levels are fantastic and I just cant believe what this natural product has done for me. Perhaps it can help you or the others reading this.

          Ive done the lot, Imuran (Azathioprine), Prednisone and the enemas and been hospitalised 3 times in my nightmare flareups, (so low in iron that I had to have a blood transfusion once as it was a danger to all my vital organs) and also tried the type 5 ASA drugs which actually made me worse etc etc Was feeling down although did not seek medication for this, understood as just caused by the symptoms I was facing. I managed.

          Finally now Ive got some peace. Im thankful for the small mercies of even being able to go to the local grocery store to do my shopping without have to abandon the trolley all while my blood pressure sky rocketed as I raced home in my car to use my own bathroom. I could never use the toilets out as I imagine some people would’ve thought they were in a bomb making factory had they heard me as my insides fell out. I know, “good grief” I can hear any readers saying but hey folks that’s what your up against when it happens to you. Thankfully my house was closeby. A minute and a half would have seen me home.

          Have you ever heard of this? A natural Antibiotic.

          Im glad youre well but I always did worry about the long term effects of take Azathioprine.

          Here’s hoping it may long continue.

          Yours sincerely
          Paula Duncan

          • Cherri' Johns May 25, 2016 at 11:50 pm #

            Hi Paula!

            How much of the olive leaf extract are you taking per day? Are you still symptom free? Are you still off all medications?

    • Joanne October 8, 2014 at 5:34 pm #

      Hi – I am very interested in the fecal transplants and how you did this at home. I am on 35 mg of prednisone and azothioprine —and having awful side affects.
      I have been fighting C Dif and at Mayo they suggeted if the meds dont knock it out the CDif that a fecal transplant can be done – about 4000$ w/o insurance!
      So how does one do it at home?

      • Amy November 17, 2014 at 1:38 am #

        Joanne,
        I have had c diff 8 times since jan. Most awful experience of my life…I am so sorry for anyone that has to deal with these two awful diseases together. I tried every drug, together and more than once for C. diff…flagyl, vancomycin, dificid…each time C. diff would go away, but then about 2 weeks later it would return..unfortunately for us UCers and Crohnies, C. diff and colitis sort of feed off of each other.

        My dr has a clinical study for fecal transplants for patients with C. Diff…but you cannot have IBD to participate in the study (yay FDA)..if, heaven forbid, C. Diff does return, he is going to do the procedure out of the kindness of his heart….He told me that one spray of fecal transplants most likely will not help my colitis but that the future (studies he is doing now) hopefully fecal “poop” pills will be available…he has put patients with Crohn’s disease in to remission using transplant pills. HOOORAY!!!! Even if this happens 5 years from now…we all have to hold tight I suppose.

        So for an alternative….I am currently, and have been, C. Diff free for a month or so, which is longer than usual, and am hoping this will stick. If nothing works for you, ask your dr about spraying vancomycin (an antibiotic that is usually taken orally for C. diff) into your colon during a colonoscopy, so far this is the best thing that has worked for me…Also, the infectious disease team at my hospital told me that drinking 6oz of kefir, 3 times a day, has shown to be helpful…

        There NEEDS to be more awareness about C. Diff…. just saying.

        Wishing you the very best,
        Amy

  2. Lorena October 7, 2014 at 2:07 pm #

    Hi Lauren and John,

    My story is similar. I’ll be 40 next year and have had UC since I was 29 (can’t believe it’s been 10 years). My flare ups were always pretty minor and since only my rectum was affected at first, an extra dose of canasa suppository would do the trick. After my second pregnancy, when my daughter was only a few months old I experiences my first BAD flare up. I went on steroids and 6mp for the first time for about 6 months. Then I was on remission for 4 years! Last year, after a month on an antibiotic for a skin infection, I started with diahrrea which turned into the WORST flare up, which landed me in the hospital for a week, with intra steroids, more antibiotics, 6mp, and other meds. I’m doing better know. Was able to obtain remission again. I’m off the steriods for a couple of months and just yesterday my GI gave me the ok to stop 6mp (because I was going almost bald!).
    I was very close to being treated with biologics too. It was a scary thought. My advise it to get your flare up under control ASAP. No matter how. Have they tested your poop for bacterial infection? Even if you have to be on Humira, the priority is to be on remission. I try to be positive and I fear a relapse, but if and when it happens, I’m already ready to do whatever I have to do to obtain remission. Sometimes, when your flare up is out of control, you need to stop it at all cost, then you can use other natural treatments to maintain remission.

    John, about the poop transplant…….you do it at home? I thought about it as well at one point (you get really desperate when you are in the middle of a bad flare up). Do you mind talking more about the process and how you do it?

    Thanks to both for listening. I love this website and most importantly knowing that I’m not alone!

  3. Sandi October 7, 2014 at 2:20 pm #

    Lauren
    have you been offered Imuran (Azathioprine)? This has really settled me, I am on 125mg daily and have been in remission since July. Feel great with limited side effects, also take folic acid, vit b complex, l glutamine and ultra care 50 million probiotics but I feel great! Good luck

    • erin October 7, 2014 at 4:25 pm #

      Lauren -I like your natural tnf list I will have to take a look into this.
      Sandy,-Imuran is quite a help I agree. It seems to be what keeps remission .
      Have you ever wondered about the effects that Imuran has on the body?
      Now that I have been on it .
      I often think of the negative effects it could have on my body,and increase in cancer risk.

  4. Lauren K
    Lauren K October 7, 2014 at 2:51 pm #

    Hi everyone! This is Lauren K (the writer of the above story… lol!) I am so excited to meet some of you on here! Thank you for the feedback and advice! I love having the opportunity to interact with those that speak my same “potty talk!” LOL! The most well-intentioned family members and friends just simply can NOT understand the process or journey as one who has/ is walking down the same path. Thank you. Thank you! So, I just wanted to give the update that I have NOT started Humira. I have decided to wait awhile longer and give this last natural approach a try. I’m awaiting the arriving of Ulcerin Compound I & II to arrive in the mail. In the meantime, the SCD diet combined with daily intake (about a glass a day) of Tart Cherry Juice (a natural TNF blocker) and Curcumin supplements (2-3 per day) are helping me! I’m clearly not in remission and have a long way to go… but I’m seeing improvements! I am truly wondering if natural TNF blockers are the missing piece… at least for me!!! I forgot to mention in my original post that the doctor believes I have Crohns-Colitis (Crohns that remains in the large intestine)… not that this really matters or makes much difference with treatment or approach. Also, I forgot to mention that I also take VSL-3 DS (double strength pro-biotic of 900 billion strands)!!! I also am periodically taking Enteragam (an amazing prescription medical food) to help absorb minerals/ vitamins, etc… that I typically can’t digest or absorb. Unfortunately, I pay out-of-pocket for ($125 monthly) for EnteraGam. My insurance does cover VSL-3 but I have a $50 monthly co-pay. I’m also on the Canasa suppository now ($125 monthly co-pay). However, this combination is truly helping. I’ve regained strength in the past two weeks and I’m eating food and not having as much urgency, or “accidents” – but my goal is to stop bleeding and attain remission. I’ll put up a quick update post in about a week to 10 days (at which point I will have hopefully received the Ulcerin Compound I and II in the mail). Thanks so much everyone! Blessings – Lauren

    • Adam
      Adam October 7, 2014 at 8:30 pm #

      Hi Lauren,

      So so so happy to hear you are seeing improvement with your approach!!

      Super awesome news, and thank you for the updates and for sharing your story with us, and hope to hear more from you in the very near future.

      Cheers to you again:)
      -Adam

  5. Andy October 7, 2014 at 5:38 pm #

    I would try both at the same time.

    Drink a couple of tablespoons of Vinegar per day acetate has recently been found to stimulate red blood cell production, should help with the anemia.

  6. Scott October 8, 2014 at 5:42 am #

    Hi Lauren,

    I was like you quite recently, on the SCD diet but not quite achieving full remission. Your comment about not tolerating Kefir suggests you might have a similar situation to me, have you looked at possible histamine intolerance?

    I mention it because I’ve found a definite link between my own UC and eating high histamine foods.

    Eating matured cheese, fermented foods like sauerkraut, some alcohol, tomatoes, eggplant, avocado, scd yoghurt, smoked fish and shellfish all trigger an inflammatory reaction. Bread also causes a problem though I haven’t worked out whether it’s the carbs, histamine or gluten that’s the culprit.

    It’s known that UC sufferers often have low levels of DAO, the enzyme that breaks down histamine in the intestines. Not sure whether that’s true with you, but it might be worth a try to limit those foods and see what happens.

    I’m in full remission now using a combination of the SCD and low Histamine diets with no drugs or supplements. Like I said, it’s not everyone with UC that has it, some people swear by their sauerkraut. However, there does seem to be a lot of people with Crohns and UC who deal badly with high histamine foods.

  7. Kel October 12, 2014 at 7:09 pm #

    Hi, new to this site, I noticed no one ever mentioned S. Boulardii pro-biotic, it has been shown to help with UC apparently in real studies done. Florastor is most well known but pricey, there are cheaper ones out there but not sure on the quality comparison, Jarrows, and Swanson to name a few. I had my general doctor work with me in the past and give me an anti-biotic because I was shown to have a bad bacteria in my colon from a past hospital stay which my colitis was treated with and also took stuff to kill parasites from a natural doctor. So it is possible the cause of the UC is a bad bacteria and/or parasites even. It is hard to tell with this stupid disease I hate it, I was good for some time but now I am flaring myself. I question that it is auto-immune, I think there is a real underlying cause.

  8. Darlene October 13, 2014 at 10:33 am #

    Lauren,

    About a year ago I started taking Chlorella. Two 1000 mg tablets am and two 1000 mg tablets pm at the suggestion of a friend who didn’t know I had UC. After maybe the third day I noticed my stools had shape and form and I attributed it to the Chlorella. (This was a very pleasant surprise!) After researching a bit about Chlorella I learned that it is an exceptional supplement and that it treats UC. It benefits the gut. A year later now and I’m still taking it. It’s very beneficial and helpful. Also, after reading about others in this group using l-glutamine I’m now taking it. It’s beneficial and I recommend it. I bought the powder form and started with the full dose. That’s too much to start with. I think gradually building up to the full dose would be better. It also reduces cravings for sweets.

    Best of luck and I hope the natural way heals all your symptoms.

    Darlene

  9. Karen Quisol May 22, 2015 at 10:44 am #

    Hi, I just wanted to share a bit about our families journey with UC. My 21 yr old daughter was diagnosed about 16 months ago with UC. She has been through many of the meds with no benefit or a bad allergic reaction. She is currently using VSL3 DS ( a strong probiotic for UC) and Entyvio infusions with a 6 mp added for a year to stop her body from forming antibodies to the infusion drug ( which is what happened with remicade). We also follow a low FODMAPS diet. About 12 or so days after starting the probiotic, she was symptom free, no urgency, 1-3 BMs a day, everything so much better. That was back in February of this year. She is still tapering off prednisone ( last day is today!) I hope this is helpful. Karen Quisol ( you can FB message me if you want to)

  10. kumar dude May 4, 2016 at 1:34 pm #

    Did this help any or did you have to take biologics?

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