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Simponi Approved for Ulcerative Colitis

founder of iHaveUC.com

founder of iHaveUC.com

Hey UC’ers,

I wanted to take a quick moment and share some news regarding a new medication called Simponi that was just recently cleared for the treatment of Ulcerative Colitis.  Just yesterday, the Food and Drug Administration, which is the “governing board” in the United States gave its formal approval for this medication.

What is interesting to me, is that like many other recently approved medications, Simponi is another immunesuppresant type of medication.  It is also a TNF blocker type of medication.  Tumor necrosis factor (TNF) is a huge part of the body’s natural immune response, and is also much involved in the inflammatory response of our immune systems.  And the general idea with these types of medications is that by blocking some parts of our body’s immune response with medications, the nasty symptoms that we all deal with when our colitis is active can be relieved.

There are some side effects from use of this medication (like all other medications), so you should definitely consult with your physician or GI doctors if you have any interest in looking into this as a possible new treatment if you are not having any luck with other medications or therapies.

Also, if you’d like to read through the general news blast from the FDA, here is the link to their news release from yesterday:

FDA approves Simponi to treat Ulcerative Colitis

And, here is a link to Johnson and Johnson’s (Janssen’s) webpage regarding this new medication:  http://www.simponi.com/

Thank you to all of you who sent me emails yesterday with this news update, and I wish the very best to anybody who moves forward with this medication.

NOTE**  As with all “newly approved” medications, longrun outcomes and efficacy is very hard to fully understand.  The long run data is just not available yet.  So please read up on as many PubMed articles as you can.  There is quite a bit of research regarding “Golimumab” (the scientific name for Simponi) within PubMed, and here is just one study related to this medication.  Effectiveness of Golimumab in Clinical Management of Patients with Rheumatoid Arthritis

If you have any personal experience already with SIMPONI (it was approved previously for some other autoimmune disease such as rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis, so maybe some of you with crafty GI docs may have already had a go with it), PLEASE fill out a review of your experience with this medication via the review button below:




Click here to submit your review.


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Janssen and Johnson and Johnson Simponi immunesuppressant anti tumor necrosis factor blocker treating ulcerative colitis SKU UPC Model

My Experience

Aug 28, 2016 by Ed Trails
City/country:: Belfast 

I was on it from December 15 to July 2016. It didn't make enough of a difference to me until roughly about June around the same time I began a major uplift in my diet of fiber. Before that still had urgency & diarrhoea. No side effects but although I started to feel better a colonoscopy revealed to improvement to my inflammation so I switched to an infusion.
****Worth noting that I was switched onto Entyvio rather than Infliximab as Infliximab has the same action as Golimumab (Simponi). A wise decision in my treatment I think as Entyvio+VSL#3 seem to have helped me. Sorry Entyvio but yer not the one fer me & my bowel. Good luck to all who try this one!


simponi

Dec 26, 2015 by stephen collins
City/country:: Beverley, england 

I have been on simponi for 5 months dose after loading dose 100cc per 28 days first 2 months noted improvement then back to normal regular flares treated with predislone talking to specialist nurse she believes the dosages aren't accurate enough 50 cc if under 80kg or 100cc if over maybe some truth in this when I see my consultant I am going to ask if any point in carrying on with this especially with the cost


Simponi for UC - 4 months in

Jun 05, 2015 by Kat
City/country:: Orlando, FL (US) 

I've been on Simponi for 3 months (1dose/mo) and just took dose 4 today. I have SEVERE pancolitis, the worst my GI doc has seen in his practice in 20 years. I have never tried another drug and have been on Prednisone on and off for 2 years to control UC. Moved to this drug since we wanted to stop the high dose of Pred bc of fears of long terms side effects. After week 3 of the very first dose I felt amazing. Down from 4-6 BMs a day to 2. The biggest benefit to me was NO urgency. This was my biggest problem raising 4 little children. Stopping to handle my business is NEVER EVER convenient. The last week of every 4 week dosing schedule I saw an increase in BMs to 4, but them it returned to 1-2 for the next three weeks again. At month 3, week 2 I was hit with an increase in urgency that I thought I left behind. Ugh. BMs increased to 4-6 and by month 3 week 4 I was at 6-8BMs. I just injected my 4th shot and we'll see what this does for me. I was off to such a great start. Being the first patient in my docs large GI practice all the docs were so excited about the initial results. Now they are a little disappointed. Will go in to evaluate in 2 weeks time next steps.


Mar 13, 2015 by carol gebhart
City/country:: Florence 

I read about this drug and hope it works for some! I had surgery because I got tired of all these drugs. Nothing helped. I might have been in remission for a year once. I am glad I had the surgery and I feel so darn healthy and great. Hiking and doing all the things love. Everyone is different about this.


Simply simponi

Mar 11, 2015 by Juliet
City/country:: Canada 

I have been on simponi since 31st July 2014 after a terrible few years of constant UC flare ups. Everything else had stopped working including prednisone. I had the initial loading doses and now the 50mg once a month.

I am so far pretty happy with the way it has controlled my UC. Did experience some joint pain and muscle cramps but after adding bananas to my diet I am much better.

Simponi is my first experience of a biologic and so far it is good. I do not think that it is a license to eat/drink what you like and not look after yourself. And as with any pharmaceutical medication it does come with side effects so I'm sure it won't be a life long medication for me. But I would for sure be dead without right now.


Simponi

Dec 30, 2014 by M
City/country:: Penticton/Canada 

Started Simponi Sept 2014 @ 200 ml two weeks later @ 100ml - one month later - Oct 2014 @ 50 ml - another month later - Nov 2014 @ 50 ml. Found it started to work for the first week then after that nothing. After injections I was very achy, tired and teeth severely sore. Two stars for ease of injection with Pen. Resorted back to smoking - only 4 or 5 a day and within days started to get better. Dec 30 - almost in full remission. Don't want to take the Simponi due to the unknown long term effects - Choice of two evils - chose smoking.


Dec 18, 2014 by angela
City/country:: Yonkers 

I've been in Simpson 6months also taking 4 llaidas daily can not achieve remission.Dr put me on every 2weeks.let's see. Anyone talking Simpson every 2 weeks


Simponi

Dec 12, 2013 by Michael

I've now been on Simponi for 16 months, for my AS. Results for me have been fantastic. As long as I don't over-tire my back, I feel my pain levels are consistently around 5-10% all month long. Prior to Simponi, I spent a year on Humira 50mg, fortnightly, but the pain was up and down like a yoyo - it never lasted the full fortnight. Even when working at its peak it was nowhere near as effective as Simponi has been. Added bonus: the Simponi injections barely sting, unlike Humira which were the most painful needles I've ever had and left me shaking every time.

Response: Thanks for Sharing Michael! I\'ve been really wanting to hear more about people\'s experience with SImponi as its relatively new, so thanks fro sharing again:)
-


Simponi

Nov 12, 2013 by R

I have been on Simponi for 2 months, is not working at all. I gave it two stars because the injections do not hurt which is a plus. My GI mentioned if this doesn't work, and since Remicaid never really got off the ground for me, that the next plan is back to Humira with an add on of Imuran. I have been battling this disease for 26 years getting close to giving in to it and thinking more and more about surgery. The only think that has ever really worked is the dreaded Prednisone.


Simponi

May 16, 2013 by Mylene

I have been taking simponi for about 6 months and have not seen any drastic changes in my UC. My GI is now adding Methatroxate in combination qith the simponi and I have been doing that for 4 weeks and again have not seen any drastic improvements. I still follow the scd diet and think that is helping more that those meds. I have not had any major side effects from this drug as of yet but worried about long term basis. But in all I do not believe in my case that it is helping.


2.9 5.0 10 10 I was on it from December 15 to July 2016. It didn't make enough of a difference to me until roughly about June around the same time I began a major uplift in my diet of fiber. Bef Simponi

48 Responses to Simponi Approved for Ulcerative Colitis

  1. bev May 16, 2013 at 11:35 am #

    Cheers Adam…

    I just still wish that drugs would stop being ‘approved’ and used, and the natural approach would be the recommended treatment in UC.

    Bev
    :)

    • Liza Goya May 16, 2013 at 11:51 am #

      Be, that would definitely be ideal to go all natural. But for people like me which have Pan-colitis and have been very ill, meds are the way to go to achieve and keep in remission. Beats having to have my colon out though I know that may eventually happen because there is such limited therapies. My doctor does gave me also see a therapist for stress and has recommended acupuncture (too expensive out of pocket since my insurance doesn’t cover) and if course diet & exercise. So good luck to all of us with this horrible disease.

      • OrdinaryWorldWhereRU May 16, 2013 at 3:49 pm #

        Hi Liza,
        I am similar to you in that I respond best to meds for keeping my UC under control. I needed little meds at the outset but after getting wretchedly ill, things simply never got back to what they were. He said my colon had become like hamburger when it was at its worst. But I still hope that with the course of time, it will heal even if it is in millimeters at a time. I too prefer keeping my colon since I have a healthy respect for how major that surgery is. I also wish good luck to us all with this horrible disease.

        • Juliet
          Juliet March 11, 2015 at 12:39 pm #

          Yeah. I tried the natural and good diet method. And after a long four years I was almost dead. So medication with clean lifestyle for me.

      • joanna May 17, 2013 at 12:34 pm #

        liza, i agree as well. i am thankful that new meds keep coming out since natural healing can only help a small percentage of people. it at least prolongs the time i have my colon!! i don’t wanna give it up- EVER.

        • OrdinaryWorldWhereRU May 17, 2013 at 4:58 pm #

          Hi joanna,
          I tried natural a couple of times and the last time nearly cost me not only my colon but nearly my life. I truly hope for a cure for this disease for everyone affected by it. I also want to thank you for being supportive towards those of us who have found that meds currently help us manage the disease and hopefully continue to keep our colons. I never want to give mine up as long as I have a choice. That is some major surgery, especially as we get older and the body’d recovery doesn’t match that of young cells and organs. Thank you!!

  2. bev May 16, 2013 at 12:32 pm #

    Hi Liza

    I, too, have pancolitis…15 years now. I was very very ill as well. Believe me.

    I never in a million years thought that a good probiotic and fermented L-glutamine would put me into remission and I would not have to take prescription meds.

    Yes, this is a horrible condition…but I still truly believe that the ONLY way to treat and manage it is not with harmful meds including biologics…but naturally. Yes, it takes time and effort. Yes, it demands consistency. No, it does not happen overnight…but if you stick with it and persevere…I am living breathing proof that natural works. Nothing will ever change me mind on this, now. Nothing. Colon removal does not have to be the final outcome. I used to think it was…but not any more. I wish people would not put so much faith in conventional medicine.

    Drugs are NOT the way to go. Been there…done it…

    • Carol from Colorado
      Carol May 16, 2013 at 5:29 pm #

      What kind of probiotic do you use? Also, what is the name of the fermented L-glutamine that you use? Would like to try it please!!!

      • bev May 16, 2013 at 10:13 pm #

        HI Carol,

        The probiotic that I use is ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. One per day, first thing when I get up on an empty stomach (no eating two hours prior) with water, and then no eating for at least half an hour.

        The fermented L-glutamine powder is by NORTH COAST NATURALS. Again, on an empty stomach (I take it with a tablespoon of juice for taste about 11am, an hour or so before lunch).

        Cheers,
        Bev

    • Ronnie May 17, 2013 at 3:39 am #

      I agree with you Bev, drugs are not the way to go. I have alot of respect for GI docs but they only treat the symptoms not the cause and in treating the symptoms you develop other things that can be life threatening. I was too scared to go off meds because I put all my faith in docs but then I took a leap of faith and I’m glad I did, I feel so much better. You should read autoimmune diet books we can medicate ourselves by eating the right things for our bodies..we need to listen to our bodies..

      • bev May 17, 2013 at 6:42 am #

        Fabulous Ronnie!

        It is so true. :)

    • Golde cohen September 21, 2013 at 7:10 pm #

      Hello

      My daughter has been bleeding for 10 months. She is on prednisone 10 mg, azacol and enemas and still with flare ups.

      Any advice?
      Thanks,
      Golde

      • Robin October 2, 2013 at 8:32 pm #

        As someone who has had this disease for 20+ yrs, it took a few years and a few GI docs to figure out that the Mesalamine/Sulphasalzine meds did not work for me and Prednisone when in a flare was the only thing that worked and that was at 40mg for weeks before beginning a slow taper.

        I have a great doctor now. Many of us go through a few until we find the correct one.

        I hope she gets through this bout soon.
        Robin

  3. Jen From UK
    Jen May 16, 2013 at 1:12 pm #

    I’m just hoping that the drugs can work long enough for my dietary changes and supplement taking to work before it surgery time. Evoo, probiotics, l glutamine, vitamins and gluten-free/low fiber diet still being adhered to, but without the drugs on top I think I’d be in a worse mess! Not sure how long I have left with a colon as I’m so sick right now and have been for 12 months think I’m running out of time to find what works for me but I’m hoping still

    • bev May 16, 2013 at 2:11 pm #

      I’m so sorry, Jen, that I shout my ideas from the rooftops.

      I know that we are all different and that the same thing does not work for all with UC. It is definitely NOT one size fits all.

      I hate to say that the drugs sometimes have their place and tinme…so I won’t. But maybe, it’s true.

      I remember when I was newly diagnosed with only proctitis what seems like now a thousand years ago, the asa suppository did it’s job and knocked it into remission. Then, as my UC progressed towards pancolitis, and flared again, the asacol knocked it into remission…

      But, what if I had never taken the meds and had started taking the probiotic and the L-glutamine first…would the UC have even progressed and grown, or would I have had less colon damage? It certainly makes me wonder if treating the UC with harsh biologics and steroids only serves to worsen the problem later…any thoughts anyone? These drugs do not HEAL the colon…they knock back our immune systems…is that the way to go I have to wonder.

      My GI said the proctitis probably would not get any worse. let’s treat it with this med…something benign. Then, a few years later the now growing UC probably would not get any worse. 30% chance. Let’s treat it with something a bit stronger. Then, a few years after that, pancolitis. Now, 15 years in, with pancolitis, if I had a dime for every time I heard that it would not get worse over the years. Then, only to hear that I may have to eventually lose my colon. Sound familiar? I am pissed off. 14 straight years on meds and all I got was this lousy pancolitis…lol…not so humorous…14 years that I cannot get back…of feeling ultra horrible and sick, and all of the time, on conventional meds.

      Now, I always feel good! I am no longer sick and tired. I no longer am afraid that colon removal has to be the final outcome.

      I guess this is why I am so adamant. Nothing can change me mind now. Every time another damned drug gets approved to treat UC, I get even more angry. Why are they still testing drugs on us poor guinea pigs?? They should be putting newly diagnosed people on the highest and best probiotics or synthetic fecal transplants (which ARE available, by the way).

      Cheers, and Jen, I am crossing ALL of my fingers (if I had more than ten, I’d be crossing them too) that you will find the same remission through the natural way, that I have. I’m still trying to figure out WHY this has worked for me, and not every single person that tries it??? What the heck is different? I’m still trying to understand and find out why and I swear that I will keep on trying until I can help EVERYBODY!!!

      Bev

      • Jen From UK
        Jen May 16, 2013 at 10:49 pm #

        No need to apologise, it’s all positive hope giving stuff… Just wish it was possible to have a chat with my damn colon and ask him what the hell he wants?!?! Lol remission/colon free I will get better :-) xxx

        • bev May 17, 2013 at 6:43 am #

          Thanks Jen. I sometimes get a bit ‘excited’ shall we say…

          I want your colon to smarten up too…lol…

          :)

      • Sana November 10, 2014 at 2:56 am #

        Hi Bev. I am amazed by what you write on Adam’s website. I have a 16 year old daughter. Diagnosed at 14 with Colitis. Now they say Crohns. I am still struggling to decide whether to go the natural way or not. When the doc first started steroids i tapered them off on my own and also stopped the MEsacol (ASACOL equiv). For over 15 months she seemed ok. Then, this july, we started the Ramadan Fast and boom she had the diarrhoea again. So again i go back to the doc and we have the whole lot of meds on since Aug. I do want to get her off meds but i read many horror stories of how you can be worse off without meds!! I have already started SCD diet since Sept. But i cannot stop certain ILLEGAL foods like CHocolate (every morning i give my daughter a chocolate banana smoothie) and white bread or pasta. I tried baking with almond flour but it is so so expensive you cannot do this forever. My food bill is so high!!

        • Bev November 10, 2014 at 9:39 am #

          Hi Sana,

          I just believe that medication is NOT the way to treat and/or manage UC.

          People with the condition just need to take more care of their diet and the types of things like advil and alcohol that they also put into their bodies. Each one of us is different, but I think that all of us eventually either stop or do not respond at all to the meds used to ‘treat’ UC. It really is not the way…

          Lots or trial, and probably lots of error. If you persist, you will find what works for you (or your daughter).

          :)

    • C Miller May 17, 2013 at 7:10 am #

      I found the book SCDiet by Elaine Gottschall is really helping. It takes time and one must follow it to the tee.
      I have taken many drugs and had a bad goof it. Now I’m down to 7 miigrams of prednizone and “The Book”.
      I can’t stress enough you have to follow it 100% or it wont work.
      Contact me if you have concerns or questions.
      C

      • Golde cohen September 22, 2013 at 12:38 pm #

        My daughter eats rice, I know you can’t on the SCD but, she is so skinny. She lost 30 pounds, and has been on prednisone, probiotics and azacol and in flare for 8 months. I am desperate. Any advice will be appreciated.

        • Robin October 2, 2013 at 8:35 pm #

          I eat Jasmine Rice with a little celery salt sprinkled on it, no butter, during bad flares. It does help. I can’t do the SCDiet because I respond better to carbs when feeling bad.

  4. bev May 16, 2013 at 2:14 pm #

    SORRY FOR ALL OF THE TYPOS…As usual, I am fired right up about a new med for UC…

    • Gail May 16, 2013 at 7:06 pm #

      Hi Bev, from another fellow Canadian, born and raised in Toronto but now living 2 hours north, in a small town on Georgian Bay. Hope you can sleep tonight now that you’re all fired up again!..(lol).. At least it’s still early on the west coast as I write this. I am TOTALLY with you about the meds. I was surprised because I thought this Simponi was new but when I googled the name and lawsuit, it appears that there is information to contact lawyers for anyone who has suffered ill effects from the drug. I’m not an advocate of litigation but there always seems to eventually be a class action lawsuit for every drug that comes along. I now have osteoporosis but absolutely will not take the prescription drugs for that. You should see the side effects! Natural is the way to go but of course it’s not easy once disease, or a condition, has gotten the upper hand. Instead of spending billions on drugs, I wish the same effort was put into finding the cause in the first place. My son has UC and my husband had it (had his colon removed in the mid-90’s before we knew anything about UC and he was severe) and I’m sure antibiotics played a huge role in them ending up with UC. Another son has “slight” inflammation which he has been told is likely Crohn’s, so for us, myself and my siblings, I think gluten and dairy have also been responsible for a bunch of health issues. I heard a fitness expert on tv yesterday say that our food has changed more in the last 50 years than it had in the previous 5,000 and that our bodies can’t handle it. He and others are saying that we have become overfed and undernourished. We need to get back to the natural way of eating as well.

      As you said, it’s hard to figure out why some people say they don’t have the same good results as you have had but I hope you will keep on trying to understand it until you can help everybody. Maybe you could write a book..?… Then maybe you would have a nickel for every time you said (fill in the blank)!

      Gail

      • bev May 16, 2013 at 10:09 pm #

        Hi Gail!!

        What a wonderful post…you made me laugh at first. Then, as I read further in…wow, your family has had some issues, huh? Yes, those good old antibiotics may have been one of the most exciting discoveries of the twentieth century…but at what cost? As for our food supply in the past 50 years…you bet our poor bodies aren’t built to handle all of the crap that we are eating…what’s the answer? It’s become so difficult to even buy REAL food anymore…I could go on and on…

        So, there are already lawyers trolling for victims with this ‘new’ UC drug, huh? No surprise, sadly. I took the acne wonder drug ACCUTANE four times in my twenties, never knowing that it could actually CAUSE UC…that, along with all of the antibiotics as a young child for bad tonsils, as well as a bout of pneumonia when I was pot on AVELOX (yet another strong antibiotic…well, my fate seemed sealed…I can’t join any class actions here in Canada. Our legal system does not allow us to sue in that way, apparently. I looked into it years ago. I would have at least appreciated ROCHE to pay for all of the UC meds that I was on over the 14 years. instead of my poor husband.

        You know, I’ve often thought about writing a book on all of this, but I don’t think that I’m quite learned enough just yet…lol…stay tuned maybe. When Adam posted this new drug approved to treat UC, instead of being happy, it just made me even more angry, and now that you’ve pointed out that there is already litigation, well, I am justified I think, in my anger. They are treating this condition with cancer drugs…CANCER DRUGS! WTH?? Does this not seem wrong to anyone else? These drugs can seriously harm us in all sorts of different ways…they just want to try anything to knock the UC into remission…but it never seems to last. I know UC is rotten, but I would never take biologics….NEVER. Not in my body…no way. That’s just me.

        I hope that I CAN sleep tonight…lol

        Thanks, Gail…you are fab!

        :)

  5. Lynne May 16, 2013 at 4:26 pm #

    I do consider that the meds may prevent & hinder our bodies from responding positively to the good natural methods we try and may even counteract them.

  6. Goldie May 16, 2013 at 7:42 pm #

    I also have pancolitis. This is the second time this year that I’ve been hospitalized. More than colitis – it’s my joint pain which is making life very hard. The doctors are telling me that the only solution is HUMIRA.
    I just went to chinese doctor in the hope of finding another solution- he gave me anti inflammatory herbs to take for 2 weeks…I hope with G-d’s help I will not have to go on this Humira.
    Currently I take Active Liquid multi vitamin /mineral, aloe vera, l- glutamine, folic acid, zinc picolonate, vitamin c, fish oil, good belly probiotic drink, liquid green algea.
    I’m tapering down on prednisone and on Lialda- though experiencing side affects (rash, sore throat, upper chest tightness, upper back pain)
    I stay off dairy and meat. I eat chicken , fish and lots of cooked veggies.
    I try to work on my stress through breathing excercise, positive affirmations
    I’d appreciate any helpful advice.

    • shelly in maine May 18, 2013 at 4:28 am #

      Goldie,
      You made it to the right place! Read up above what Bev uses. I think you need a good quality probiotics. Some of those ready made things have extra ingredients may actually be irritating to your system. Just because they are “natural” or organic doesn’t mean you necessarily need them or can tolerate them. A sort of less Is best approach and listening to your body and keeping track of EVERYTHING!
      I have been through all the meds and now use
      those things including Chinese herbs from my chiro. It is not a stagnant process and you have to communicate very well with that prescriber. You have to be your own science experiment and scientist all in one. Remember that herbs and natural stuff have side effects and interactions so write everything down and communicate tat with all your doctors and prescribers. Be careful with aloe, it too can cause some people gastric issues. Your body will react to tapering off meds, but just hang in there. I take Mega doses of vsl 3/ critical care and fish oil plus the other stuff. Read about scd, the science makes sense I do about 95% SCD.
      hang in there…your efforts will pay off!
      best, Shelly

  7. Cass May 17, 2013 at 5:47 am #

    I was going to be part of a trial for a drug similar to this, not sure if it was this or a similar one, but looking at all the possible side effects I backed out and gave up on the drugs. Surgery was definitely the right option.

  8. joanna May 17, 2013 at 12:39 pm #

    hopefully, simponi helps some people. i haven’t had much success with tnf inhibitors, so i doubt i would try this one since remicade and humira weren’t doing it for me. if only they would come up with a cure for this damn illness- then i’d be thrilled!!! until that day comes, i’ll just keep experimenting and doing whatever i can to keep my colon.

    • Corey June 23, 2017 at 1:41 pm #

      I hear that!… CURE!… I’m 37 n have had uc since I’m 13…. for the most part I have had it under control most of my life… drink , eat what I want.. maybe that’s the problem now… have had 3 flares this year n my doc wants to put me on Simponi… not sure I want to go that route tho.

  9. bev May 17, 2013 at 12:52 pm #

    I hear that Joanna!

    I have to say…I think the ‘cure’ lies in natural things, though. I don’t see a drug quite doing it, if you know what I mean. They have to find a way to HEAL the damaged colon, not shut our immune systems down. I believe that they will eventually realize that that is the only way to a true cure, other than removing the colon.

    Have a good weekend…I hope you are feeling better these days. It’s sure been a long haul for you, my friend.

    Bev
    :)

    • joanna May 17, 2013 at 3:03 pm #

      yeah, killing the immune system definitely isn’t the way to go. i’ve never believed that our immune system was overactive un autoimmune diseases- i believe that it is too weak. why else would we not be able to fight off this illness? the logic these medications have really makes no sense to me even though i have tried them all. sometimes this disease just isn’t logical and i can’t deny the success that tnf inhibitors have had on some people. people at the infusion center i go to have been on remicade for over 10 years and are doing great. just makes me wonder what kind of UC/Crohn’s they have and how it differs from mine.

      i think it’s hard because each person’s UC is caused from something different, so whether it is a medication or natural treatment that works for you, it could cause hell for someone else if their UC didn’t start the same way. i guess that’s why UC is one big experiment!

      i’m still trying to get rid of c diff (main symptom is bleeding) but i’ve managed to gain 16 lbs. that at least lets me know that my body is absorbing some nutrients now and that my UC inflammation must be going down. just not sure how long i can rely on blood transfusions (i’ve had 5) and iron infusions (19!).

  10. bev May 17, 2013 at 6:11 pm #

    That’s just it Joanna, and it drives me nuts! We are all so different in this. I want us all to recover naturally…but it doesn’t happen for everyone, does it? It makes me so mad. Frustrated…upset…at a loss…

    I have read that some people have actually had their colons removed because they went natural! That is so awfully discouraging. It really makes me think twice about advising everyone to just go natural and just drop their meds! I never want to advocate that.

    I never want anyone to stop the meds without being well FIRST. I did not stop my meds until I was in remission on the probiotic. As soon as my UC symptoms disappeared THAT is when I discontinued the medication.

    Bev

    • Nikki in Chico
      nikki May 19, 2013 at 7:25 am #

      Bev,
      You are a gem for “Shouting from the rooftops” and for repeating yourself diligently regarding the miracle you’ve experienced with going natural. I’ve been following the SCD since the end of January (except I don’t go crazy with it–I still eat meat that may have been seasoned with “questionable” spices, etc. And I was doing so well on the diet that in mid-April I asked my doctor if I could stop taking one of my meds. I’m on 6mp and Colazal (Adalimumab). I have been wanting off the 6mp for a long time but doc said start with the Colazal. Within a week my symptoms started to reappear. What always happens first for me is I have trouble “going,” like my body wants to hold on to the stuff. I think it’s a sign that my insides are becoming inflamed.

      Anyway, I got back on the Colazal, but I want to try the L-Glutamine– see if it could replace one or both of my meds. Do you think that my homemade yoghurt could be a replacement for the probiotic? Have you ever tried to do that?

  11. bev May 19, 2013 at 7:36 am #

    Hi Nikki,

    No, I have not tried homemade yogurt. I’ve heard a lot about it on this site, though…anybody want to chime in here to help Nikki with this question?

    That’s not good that you had symptoms reappear when you went off of the colazal…I had quite the opposite experience in that when I stopped the asacol, I felt so much better. I have to say though, that the UC symptoms had already pretty much disappeared because of the probiotic and L-glut before I stopped taking it…everything except the d and bleeding. I think the asacol was giving me worse D anyway, tho, as I think my body started rejecting it.

    I wonder if you need to see the remission, BEFORE you discontinue the meds? Or, does one’s body have to simply readjust, and when you stop a med that you’ve been on for a long time, the body may actually show worse symptoms at first? I wish I could figure all of this out. Almost constantly, I am thinking about UC…causes and possible remedies…before I leave this world it would be so wonderful to get this damned condition figured out!!

    You just keep trying…experiment…it’s really all we can do, until we finally find that ‘thing’…that so called magic bullet that makes us feel human again…I still can’t help but wonder if your body is or was just readjusting to the withdrawal of the colazal, and that if you wait and stay off of it a bit longer…if things would just straighten themselves out?? This drives me crazy…

    Cheers for now,
    Bev
    :)

    • Nikki in Chico
      nikki May 19, 2013 at 7:49 am #

      That’s the weird thing, Bev. My symptoms COMPLETELY disappeared with the diet. I felt like a normal person! I was too scared to stay off the Colazal when I noticed signs of my disease reappearing. I’m in school full-time right now and didn’t want to risk it. I am going to order the fermented L-Glutamine (your brand) and give it another go this summer (weaning off the meds). I think you may be right about letting my body re-adjust after being on meds for so long. The diet has been such a success for me that I can’t help but be suspicious of everything Western, diet and otherwise!

      • bev May 19, 2013 at 8:19 am #

        Nikki, definitely stick with that diet! That’s so fantastic. Yep, if that had happened to me…the UC symptoms beginning to rear their ugly heads, I’d be very cautious as well, about discontinuing the meds. I wish the meds weren’t so potentially damaging and dangerous…stupid things. Sometimes, you just can’t go off them at the exact time that you want to. I agree with you…maybe in the summer when daily life it isn’t so stressful…

        Maybe the L-glutamine will be just what you need to retry going off the meds. It does actually heal the colon…perhaps that’s what you need…the probiotics simply repopulate the good bacteria…they don’t heal the poor old colon.

        Let’s hope that’s the ticket!! My husband always says the he thinks it is the L-glutamine keeping me where I am…he just may be correct in thinking that…the only symptom that I had left after taking the probiotics for a month was some bleeding. Once I added the L-glut…it simply stopped! That’s when I felt REALLY ‘cured’!!

        Bev
        :)

        • Carol from Colorado
          Carol May 19, 2013 at 5:24 pm #

          Where can you buy the fermented L-Glut?

          • bev May 19, 2013 at 9:54 pm #

            I buy it at my local supplement store. I am in Canada, and I believe it is a Canadian manufacturer that makes it. If your local store does not have it, they can probably order if for you if you ask them.

            Otherwise, you can apparently buy it online. It’s called NORTH COAST NATURALS FERMENTED L-GLUTAMINE. I use the unflavored powdered form. It comes in a large plastic tub/jar.

            Cheers,
            Bev
            :)

          • Carol from Colorado
            Carol May 20, 2013 at 9:00 am #

            thank you so much!!!

          • bev May 20, 2013 at 9:51 am #

            No worries!

            Love to help…

  12. Nikki in Chico
    nikki May 19, 2013 at 8:26 am #

    Yeah I read up a little on your L-Glut and other forms of it and it is supposed to reduce recovery time after strenuous exercise, too. I was thinking I need an anti-inflammatory that focuses on the colon. The L-Glut may just be the ticket! I can google fermented L-Glutamine, and your name will sometimes appear on the list of sites to visit!

    • Bev May 19, 2013 at 8:42 am #

      Whaaa???

      Really…my name is on google…I don’t know whether to be flattered, or afraid!!

      That’s kind of funny, actually…thanks for telling me…I had no idea…

  13. Nikki in Chico
    nikki May 19, 2013 at 8:44 am #

    Yeah, i would feel the same way, lol!

  14. Sharon May 28, 2013 at 5:23 am #

    I am relatively new to this site and very encouraged by the number of people who are “naturalists”. I have had uc for 23 years and never stayed on any meds once i achieved remission. I used asacol most of the time along with a variety of enemas or even at times prednisone. I found the drugs worked wonders and most of my flares were completely gone within a month if I started the meds upon the first sign of a flare and took the highest dosage until I quit flaring then slowly dropped to the lowest dose before going off all meds. I would guess that I was taking meds less than 10% of my uc life. Maybe I am more accepting of the drugs because they have given me a quality of life I could not have had if I were constantly stressing over everything I ate and on the verge of a flare all the time.

    I currently need the Humira and hope to wean off of it (as my doctor highly recommends) when I achieve full remission again. I thought I was coming off about 3 months ago but immediately flared and have struggled to regain remission. I take VSL#3 but wasn’t consistent with it until a few weeks ago. I plan to add the L glut and tweak my diet even more. I gave up aspartame, try to eat “cleaner” with fewer processed foods, and try to add things that heal my gut but give good nutrition. My concern is that those of us who use the drugs are sometimes cast as people who don’t take the time or effort to research natural options. I feel like using the meds is PART of my therapy and I know my body and my disease pretty darn well. I would never take maintenance drugs if I didn’t need them. I hate taking Tylenol much less poppin’ a shot every other week; however, my life in remission is healthier, happier, and more stress free than it would be if I were bleeding every day.

    • bev May 28, 2013 at 7:12 am #

      Fabulous Sharon!

      If the drugs help, well, it’s a no brainer! Keep doing whatever works for you….always! You’re right…quality of life is everything.

      Cheers,
      Bev
      :)

  15. Barbara May 27, 2014 at 4:20 am #

    Thanks everyone for all useful info. It has helped me so much.

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