Ulcerative Colitis Will Not Keep Me Down!

Freddie on a bike ride!

Freddie on a bike ride!

Introduction:

I am 43 yr old male active male from Melbourne, FL that was diagnosed in July 2012. After noticing blood in the toilet in early June, I went to my general practitioner. After several tests I was referred to a GI doctor. The GI doctor preformed a colonoscopy in July 2012 which revealed that I had UC from my rectum to 10″ into my sigmoid colon.

Some more about me:

I am very active in the cycling community in my town and ride in as many charity events that I can. I am also an avid golfer, try to play every weekend with my friends (living in Florida I can play year round). Having UC has impacted my activities on several occasions. I had to take long golf cart rides back to the clubhouse or make detours on the bike to stop at a convenience store for a bathroom break.

Symptoms:

I am currently experiencing cramps, back pain and loose stool. This is an improvement from January.

Colitis Won’t Keep Me Down

I started taking 2 Lialda in July and remained in remission until December 2012 when all hell broke loose. Between 12/31/12 and 1/19/13 I lost 38 lbs. I was going to the bathroom upwards of 25 times per day and lost my appetite. The cramps that I experienced I would not wish on anyone(my wife still can’t believe how bad they were). I progressed through 4 Lialda per day and 60mg of Prednisone (which I discovered that I hate with a passion) with no relief or improvement. In January I was told I needed to progress to a biologic treatment. On 1/6/13 I did my blood work in preps to start on Humira. My doctor called me on 1/8/13 to inform me that the blood work revealed that I had elevated liver function numbers and I could start the Humira until the liver numbers were back to normal. He feared that I may be experiencing liver failure.In the next 4 days I did an ultrasound, Cat scan, and a MRI to check my liver. All tests revealed that my live r function was fine.

I got a referral to the Mayo Clinic in Jacksonville,FL but my appt. was not until 2/13/13. So, I was stuck to suffer until that appt. My cramps became so severe that they were lasting up to 30 mins and come on every hour. I asked my doctor for something to relieve the pain and got prescribed Bentyl. The helped but did not eliminate the cramps. My visit to the Mayo clinic was great the doctor I worked with made the determination that the cause of my high liver function numbers were due to a viral infection and that I should proceed with the Humira. He advised that he would consult with my GI doctor at home. I started the Humira on 2/25/13. It is now 5/2/13 my Colitis symptoms are still around minor cramps and some loose stool but, the side effects from the Humira are kicking my ass. I am experiencing muscle pain in my legs, fatigue, and back pain.
My family and employer have been very supportive over the last few months. I have been able to work from home and I have only missed 4 days of work due to doctor appts.

My GI doctor has advised if this works I will be on it for the rest of my life based on my age and past flare ups. The long term effects of Humira are somewhat concerning to me. I am concerned that the Humira is not going to work and my next step will be a surgery (which I don’t consider and option for me). Any advise on other options to try would be greatly appreciated.

Medications:

Past Meds
Lialda worked for me for the first 5 months
Perdisone- I will never take this stuff again I am still getting over the effects of it
Rowesa Enemas- worked for a few weeks but, I got tried of cramming those things in my butt
Cannas Suppositories- same as the enemas
Current Meds
Humira- To be determined if this is going to work. The side effects from it suck. The muscle pain and back pain that I am experiencing make it hard to get moving in the morning or if I have been sitting for longer than 1 hour.

written by Freddie

submitted in the colitis venting area









61 Responses to Ulcerative Colitis Will Not Keep Me Down!

  1. Wendy
    Wendy May 15, 2013 at 8:05 am #

    I’m 45 and was diagnosed in 2009, but had a very bad flare for a year before they diagnosed it. I tried all the drugs and do not like them all. On top of that, many of the drugs can have serious side-affects such as lupus and cancer for remicade. There are also relatively new drugs and who knows what the long-term side affects of those are. On my second flare-up I was hospitalized for five days. I had to have Solu-Medrol through IV which is a steroid and it took three days the that IV before I saw any improvement and two days with that IV Solu-Medrol before they stopped giving it to me and started giving me prednisone. The first flare I was not hospitalized and only took prednisone tablets.

    They tried giving me Asacol, which I was on for a year, and I am allergic to that and all drugs in that same family as Asacol. My joints ached so bad it was difficult to get out of bed in the morning. I was also exhausted all the time and felt incredibly lazy.

    Eventually I just stopped all drugs totally against doctors orders and only took supplements and vitamins. The doctors labeled me as crazy and after about six months I got my own colitis under control without drugs. I went to Mayo Clinic because it was so bad for so long I was thinking of removing my colon and wanted to talk to a different surgeon than the one in Fargo and the one at Mayo said I was doing the right thing for my body and keep doing it. The doctor at Mayo told me to call if I had another bad flare and they would try to help me. I feel far far better using Mayo rather than the doctors here.

    I feel tremendously much better using supplements and vitamins rather than the medicine. The doctors even suggested I take zanex or xanex or however you spell it to make sure I don’t feel stress so that the colitis doesn’t get aggravated. To me, that isn’t good.

    I’ve read about many people on here that use natural stuff to control their colitis and it works for them. It involves a serious of harsh lessons figuring out what is right for you though because it seems everyone is different. I, for instance cannot touch chicken and many people seem to eat it no problem. If I even try any meat even when I’m doing really well, I get horrible pain and my body liquefies the meat and sends it right out the back door just as quickly as it came in. There’s an SCD diet that seems to work very well for Adam and he has a book you can consult. I still haven’t consulted it but I always mean to do read it. I have to take ideas and use what works for me.

    I hope you are able to control this the natural way, but for some I think using drugs is critical. Not using them would be like a leukemia patient not taking medicine. I don’t want to use them though, and I don’t. They all seem bad for me.

  2. Wendy
    Wendy May 15, 2013 at 8:09 am #

    Oh, I didn’t mention, between the time I stopped taking the drugs the doctors told me to and saw Mayo Clinic was about six or seven months. During that time is when I was treating myself with supplements and vitamins. By the time I saw Mayo I made myself go into remission. I have never made myself go into remission though, without the help of prednisone at first. I’ve only had two flares since being diagnosed in 2009.

    • Jay May 15, 2013 at 11:03 am #

      Hi Wendy, may I ask what vitamins and supplements you are taking? I’ve been looking for ways to treat my UC without those harmful drugs.

  3. Wendy
    Wendy May 15, 2013 at 11:52 am #

    I take BioAstin Hawaiian Astaxanthin (I’ve heard any other brand doesn’t work well). Spirulina Micro-Algae (premium Nature’s way), Kyoto Chlorella (I take a handful three times a day). Vitality Total Dietary Supplement from Melaleuca and Pur Absorb Iron by spatone 20 ml (0.67 fl oz). I also intend to add the supplements Bev mentioned probiotic (which is already in the Vitality Total, but it’s not the kind Bev mentioned) and that L-C??? can’t remember the name. I don’t take the last two ones but I intend to.

    • ANA PAULA December 6, 2014 at 9:59 pm #

      HI WENDY, IT IS LOVELY TO HEAR THESE SUCCESSFUL STORIES. MY SON WHO IS 12 HAS BEEN DIAGNOSED IN MARCH. DID VERY WELL ON APRISO UNTIL AUGUST AND THAT WAS IT. SINCE THEN, WE ARE STRUGGLING TO FIND A MEDICATION THAT WILL WORK FOR HIM. HE WAS JUST PUT ON PREDNISONE AGAIN AS A TENTATIVE FIX. WE SUSPECT HE CAN NOT TAKE THE MESALAMINE, BUT WILL SEE. IF THIS DOES NOT WORK, DOCTORS WANT TO PUT HIM ON REMICADE.
      I AM DESPERATE LOOKING FOR NATURALS, HOWEVER, SINCE HE IS ONLY 12 I HAVE TO BE CAREFUL. DO YOU HAVE COLITIS IN THE ENTIRE COLON?
      WHAT IS THE KYOTO CHLORELA? AND THE SPIRULINA?
      THANKS FOR YOUR RESPONSE.
      ANA PAULA

  4. bev May 15, 2013 at 2:57 pm #

    Hi Freddie!

    That’s my husband’s name…well, Fred, but I affectionately call him Freddie…lol

    Anyway, what Wendy said…and, for my two cents…

    I’m just gonna say it…ALL of the meds used to treat UC are not only dangerous, but will eventually stop working. I was on meds for 14 years straight without a break. I was feeling so ‘crappy’ that I decided to try a GOOD probiotic. Best thing that I ever did. My doc was against my going off the meds, but oh well, too bad. After a few weeks on the probiotic, most of my UC symptoms, the cramping, the urgency and the frequency all disappeared. I still felt nauseated and had no appetite, tho, so I made the BIG move and stopped taking the asacol all on my own. Then, I REALLY felt better! The only lingering symptom was bleeding, so I was recommended fermented L-glutamine powder to heal the mucosa of the colon…which it promptly did, within two days. No kidding. This is for real. My doctor is a bit peeved that I am so ‘well’. You’d think he’d be happy for me…but I digress…

    This is all true. I have never believed in any sort of natural stuff before, instead, always listening to and trusting doctors. Well, not any more.

    Everyone who is new to this condition needs to know that the drugs don’t work. They will further damage your body, Sad, but true. We all have to find what helps us NATURALLY. Because we are all so different in our uc, it takes a bit of work, and definitely CONSISTENCY. Even one year later, in remission, I still feel better and better!

    I also take vitamin D and astaxanthin every day, as they are natural anti-inflammatories. I take those two things with a meal, as they are best absorbed with fat.

    The probiotic MUST be taken on an empty stomach (no eating 2 hours prior) with water, and then don’t eat for at least half an hour. I take it first thing in the morning at 6am, and then exercise for an hour. The L-glutamine should also be taken on an empty stomach. I mix it in a tablespoon or so of juice, for taste, at about 11am.

    If you want to feel human again, give the natural way a try. You don’t have to stop the meds right away…but you may find that you want to!

    Bev
    :)

    • Caroline
      Caroline May 15, 2013 at 4:26 pm #

      Bev, every time I read your comments I smile because you (and several others on this site) give so much hope to people who are struggling. I don’t have the courage yet to totally bail on meds (I finished my 2 months of prednisone and am currently taking Apriso) but I have found a wonderful doctor who is open to weaning me off of it if I continue to do well for the next year. I have not had the super-fast turn around that you did, but the supplements and the diet are so key. I feel great and am thankful to this site for helping me try different things until I figured out what works for me. Here’s to no more flares, a Paleo diet, Vit D, glutamine, VSL, and astaxanthin. :)

      • bev May 15, 2013 at 7:09 pm #

        That’s so great, Caroline.

        Kudos to you girlfriend!

        :)

    • Lane May 15, 2013 at 5:38 pm #

      Hi Bev,

      Funny you mentioned that your doctor is a “bit peeved at you”. I think mine is too. The last time I went to see my GI I had no symptoms and he acted like he was peeved too! Recently, his office called to schedule a 6 month check up (I’m overdue by a couple of months)..I still don’t have any symptoms and hate to spend the $ to see him. I want to wait a couple of months so told the office I will have to call at a later date. August will be a year that I’ve been symptom free and I want to wait until that time. Also, my Primary Care doctor wants to do blood work then so I’m postponing my GI visit right now. I’m so happy I am off traditional meds. Again, all my best wishes to you Bev! :)

      • bev May 15, 2013 at 7:08 pm #

        Oh Lane…we have so much in common, don’t we?! Doctor-wise, as well.

        I just love hearing about your continued success…it’s the best!! I am doing great as well. I don’t even tend to worry any more. I haven’t seen my GI in over a year, and also opted out of my last scheduled colonoscopy. I’ll have another one in the future, I’m sure. (I know it’s important…or is it really…I’m staring to wodner if colonoscopies are just good money-makers for doctors). Just, I’ll have one when I want to, not when anyone else tells me that I have to.

        Cheers my friend,
        Bev
        :)

        • Lane May 15, 2013 at 8:17 pm #

          Hi again Bev,

          You know, I wonder if a lot of this is just a money-making thing for doctors. I really can’t afford to go if the doctor isn’t doing anything for me. The last time I went to the GI doctor, it cost me $40 and he didn’t even do anything! And yes, he did seem a little upset because I didn’t have any symptoms. So I am trying to wait until August. Like you, I’m trying to do it naturally as I really do think that is the best way. By the way, Bev, do you use olive oil? I’m cooking more with it as I think it’s beneficial. Again, a BIG THANK YOU!!!!! :) All my best! Lane :)

          • bev May 15, 2013 at 9:54 pm #

            I actually don’t use olive oil, Lane. Not yet, anyway. If things ever go sideways, I would definitely try it!!

            Graham in the UK does wonderful on it.

          • Wendy
            Wendy May 23, 2013 at 3:52 pm #

            My mom said as soon as you cook with it you may as well use any oil because of the chemical change from cooking.

        • Carol from Colorado
          Carol May 23, 2013 at 3:46 pm #

          You do need to check to see if you have colon cancer. At least, I am going to do that.

    • Freddie
      Freddie May 17, 2013 at 6:56 am #

      Bev,

      Thanks for the info. I saw my GI doctor yesterday and told him that I was not going to take the Humira anymore and I was not going back on meds. I want to try a natural solution. To say the least he was not happy with my decision. He told me there is no proof that a diet causes or can assist in relieving the symptoms of UC. I challenged him to show me the study that proves that statement. He could not provide any information on any studies that prove his statement. I have read a lot on this site and through other research that I have done about the SCD diet and probiotics. I started the SCD diet this week and feel good so far. Still have some joint and muscle aches from the Humira. What probiotic do you use?

      • bev May 17, 2013 at 7:18 am #

        Freddie, I am thrill for you….this will change your life.

        I take ULTIMATE FLORA CRITICAL CARE by RENEW LIFE. It really matters when you take it. One per day, with water, on an empty stomach. Very important. Then, don’t eat for at least half an hour. As I said before, I take mine when I get up in the morning, and them exercise for an hour, so I don’t eat for that long afterwards. Probiotics do their best job when they aren’t fighting food on their journey into the colon. Also, this brand is enteric coated, meaning it does not dissolve in the stomach, but rather, when it reaches the colon.

        The L-glutamine that I take is fermented powder form by NORTH COAST NATURALS. This will actually HEAL the colon! This, too, works best on an empty stomach. I take it about an hour before lunch with a small bit of juice, just for taste. It’s a miracle thing, this L-glutamine.

        I swear that I am not some kook or natural freak…I never tried anything natural for 14 years, instead trusting and believing whatever the doctor told me. Heck, I knew nothing about UC at all. Had never even heard of it. I really wish I would have known about probiotics and L-glutamine, and other natural ways of treating this. I can’t get those years back, and who only knows what damage the 14 years of meds did to my body…

        It pains me to keep hearing over and over again that the newly diagnosed are still being prescribed the same old merry-go-round of harmful meds. Not only do they all stop working, but they can literally do further damage to our bodies. It’s really tragic, and I keep waiting for the protocol to change!

        Remember to give this time. For me, it only took a week…but just over a year later, I find I’m still improving, if that’s possible! Some people take longer to see results, and I think because of that, may bail out too soon. Don’t stop…and be consistent. It all matters. This will change your life. It did mine…

        Bev
        :)

        • Carol from Colorado
          Carol May 23, 2013 at 3:54 pm #

          My inflamation is also in my rectum area and colon. What can I use for the rectum area as far as going natural. The inflamation is not bad in the rectum just pink looking a bit. I have used enemas for way too many years and it does not even work that well. I am in remission with the Imuran right now but have had some spotting in the past with this medicine. My UC sucks basically! I hate going to the doctor. Doctor told me Humira is next and I don’t want to use this. To me that is just temporary and a damage to the body.

        • Carol from Colorado
          Carol May 25, 2013 at 1:41 pm #

          Do you still see your doctor? Is he nice to you?

          • bev May 26, 2013 at 6:18 am #

            Are you asking me Carol?

          • Carol from Colorado
            Carol May 26, 2013 at 5:44 pm #

            yes!

          • bev May 27, 2013 at 6:11 am #

            I haven’t seen my GI in over a year. She is unimpressed with my progress, and a little ‘catty’ about it. She is convinced that she knows best, and that I will not maintain remission. Whatever…I am frankly unimpressed with HER, as well.

            Hopefully, I’ll never NEED another appointment with her…lol

            :)

      • bev May 17, 2013 at 7:19 am #

        THRILLED for you…sorry about the misspell…

      • Michael Hurst
        MichaelKHurst May 27, 2013 at 1:33 pm #

        Freddie,

        It sounds like you are on your way to achieving better health by knowing not to take doctors at their word for this illness. I wish I had known information like that known by many here including Bev back in 1999 when I was first diagnosed. The biggest misinformation I got from GI doctors included that diet has not impact on UC and that bacteria has nothing to do with it. This in spite of the fact that the addition of the anti-biotic Cipro brought my first flare under control. Remicade and Prednisone ended up contributing to a skin infection on my leg getting out of control resulting in 4 days of hospitalization, so I think the side effects of immuno-suppressant drugs is definitely something to be concerned about.

        Ultimately what worked for me was fecal transplants combined with protein shakes, mesalamine as well as anti-depressants. I found out about fecal transplants being successfully used for Ulcerative Colitis literally days before I was scheduled to have surgery at Mayo Clinic in Jacksonville. This from an article published in the Journal of Gastroenterology in 2003 by Dr. Borody documented 6 cases of UC that were completely healed. Ironically it was the colorectal surgeon who was going to perform the surgery who encouraged me to take meal replacement shakes, so that I would be able to more quickly heal from surgery. I ended up picking a body builders shake which included high amounts of L-Glutamine among other amino acids. This helped me get my flare into remission and taper off Prednisone a month before my surgery date.

        While there are many approaches to treating UC with diet and supplements that have been for people one advantage of the treatment approach I choose was how permanent the results have been. I have been symptom-free for almost 2 years now without any continued drugs, supplements or dietary restrictions. So I consider myself to be completely cured at this point.This after 12 years of Colitis which resisted almost every other form of treatment.

        Similar to the experience of others who became healthy using methods other than those prescribed by doctors my GI Dr was definitely pissed, and confounded especially when a colonoscopy revealed healing across large portions of my large intestine about 14 weeks after I had started the fecal transplants. Since according to him I couldn’t possibly heal he told me that the patchy pattern during the early stages of healing meant my Colitis must be changing into Crohn’s Disease, something which almost never happens. Of course if that really was the case then surgery should not have been indicated for my condition. I haven’t seen him or any other GI doctors since.

        • bev May 27, 2013 at 4:25 pm #

          I can read your story over and over again, MichaelK.

          I actually wish I could have the fecal transplants, even though I am in remission for over a year on the probiotic and L-glutamine, because I feel that it is, in fact, the cure.

          Should my symptoms ever return, I will be diligent n getting what I want, namely the FTs, and I will not stop until I do. I will be the boss in matters that affect my health.

          Please keep telling your story to all who join this site. We have, for far too long, trusted ONLY in what our doctors advise us. It has been a costly mistake in a lot of cases, mine included. After what I’ve been through with doctors, telling me that my ONLY options for treating this condition was through drugs and finally surgery, I no longer ‘hang’ on their every word.

          Cheers, and thank you for your wonderfully informative and inspirational posts,
          Bev
          :)

          • Michael Hurst
            MichaelKHurst May 29, 2013 at 12:58 pm #

            Hi Bev,

            Thanks and I’m glad what you are doing continues to work for you and certainly for any treatment option that works I am a fan of “if it ain’t broke, don’t fix it” approach. I think there are different ways to do treat Colitis successfully.

            One thing that both of our treatments have in common in that they address both the bacterial cause of inflammation and the nutritional aspect to support healing as well.

            In other news my story just got picked up by the news media: http://blogs.plos.org/publichealth/2013/05/29/why-diy-fecal-transplants-are-a-thing-and-the-fda-is-only-part-of-the-reason/#comment-54505

          • bev May 29, 2013 at 2:29 pm #

            Yes…bacteria…I think that’s at the root of all bowel problems anyway.

            I am not surprised by the news media picking up your story! That is fantastic. The news media should also troll this website for other newsworthy fare. They could find a lot of success UC stories here…

            Cheers

    • Tracey Borsos August 8, 2014 at 1:26 pm #

      Hi Bev
      That made interesting reading for me. I have only just been diagnosed with UC and frantically looking for natural methods to help control it. But there is so much info out there I don’t know where to start. All I do know is that I don’t want to fill my body with lots of dangerous drugs just because that’s the norm. Do you know of any websites that focus on ‘natural’ remedies ? I’ve also heard that ‘Manuka Honey’ has had successful outcomes too but again not sure exactly which one to take and what strength ?
      Any further info would be much appreciated.

      Thanks :)

      • bev August 9, 2014 at 7:38 am #

        Gosh, Tracey…I’m not sure about other natural remedies, really. Only what I take. This website has a ton of fabulous info. I think the main thing is that each one of us has to try different things and discover exactly what works for us.

        As you probably have read on here, for me it’s a good probiotic, L-glutamine and astaxanthin. I also take vitamin D.

        Can anyone else weigh in here and help Tracey with the question??

        Cheers
        :)

      • Mary August 10, 2014 at 7:16 am #

        Hi Tracey,
        I believe you are already on the right track giving natural methods a good try to control your recent diagnosis of ulcerative colitis . My son has colitis and the medications have caused many problems for him. He is now in remission with the supplements Bev takes, except he takes a 200 billion probiotic. He takes 50mg 6 mp, but it hasn’t helped him at all, and is afraid to stop taking it. He also takes an antimicrobial, non-absorbable antibiotic which targets the gut. This has also worked wonders for him as we have been told colitis is bacterial. A more natural away around taking an antibiotic is oil of oregano – do your research on this oil. It is anti fungal, antibacterial, anti virus – it has helped my 3 children and my husband get over many different ailments! All the best and I hope you find the perfect natural way to lead you into remission.

        • Mary August 10, 2014 at 7:28 am #

          Tracy,
          Regarding the manuka honey, I have been told UMF 20+ is the best. My son used to take it every day along with aloe vera and slippery elm, which got him through a period where he unknowingly was allergic to mesalamine.

  5. Wendy
    Wendy May 15, 2013 at 3:58 pm #

    Thanks for posting that stuff Bev :) I forgot what all you said and I was too lazy to look it up. I do have it written down in OneNote on my phone. That’s the L stuff… L-Glutamine.

    • bev May 15, 2013 at 7:09 pm #

      Lol…no worries. Lazy?! You?? I don’t think so Wendy!

      :)

      • libby May 17, 2013 at 4:57 pm #

        Bev,

        on the probiotics do you take the regular or the colon critical care? I’m still working on figuring out what’s going to work for me, I just stopped the VSL#3 I don’t think it was working for me. my mornings is what is worse for me. I have my good days and bad days. I want to get off the pred so bad, I also started taking sulphazaline like 11/2 wk ago I see some improvement not a whole lot.

        libby

        • bev May 17, 2013 at 6:03 pm #

          Hi Libby,

          I am still taking the critical care…I have heard about the new ‘colon’ one, but because the other one is working so well for me, I haven’t tried the other. Apparently there are 100 billion strains instead of only the 50 billion that is in mine. I wonder if they are the same strains in both?

          I want you to see more improvement, too! I’m so sorry that you aren’t seeing it as yet. Do remember…it can take time. Persistence and consistency are key. I know we all want things to happen fast, but it isn’t always that way…dammit…

          Cheers
          :)

          • libby May 17, 2013 at 6:26 pm #

            Bev,

            ill ask when I go to the store tomorrow. also I’m taking the lglutamine but its not fermented, I’m going to get the fermented tomorrow at the store as well hopefully this will make a difference!

            once again thank you for replying, I love reading your positive posts. hopefully that’ll be me soon!

            libby

          • bev May 17, 2013 at 9:56 pm #

            I hope so too…it would be so wonderful if you felt great…

            Please keep us all posted. The more we get better, the more we need to tell others!

        • shelly in maine May 18, 2013 at 3:57 am #

          hi Libby,
          I think you should keep the vsl 3 going. I noticed a small difference when i added another probiotic(the critical care) because I think adding multiple strains is good, also the delivery is different…my vsl is powder the double strength andBev’s has a delayed release capsule…so my theory is how much ans what actually makes it to where it needs to go can be enhanced and your chances increased…just remember they are only touching the tip of the iceburg with the gut bacteria research…just my opinion, but based on some recent research.
          Hang in there!
          best, Shelly

          • libby May 18, 2013 at 5:21 am #

            Shelly,

            I’ll keep it going today. I’ve just been so frustrated with trying to find what is going to help me. I also have the double strength powder, usually as soon as I take it in the morning I have to run to the restroom. I’m not sure if my body is absorbing it or not. how do you take your probiotics?do you take them at the same time?

            libby

        • shelly in maine May 18, 2013 at 7:18 am #

          hi Libby,
          Yes..frustrating. UC teaches patience, perseverence, science, determination, appreciation of the little things and good moments and baby steps toward health! It is important to remember thatUC is not a one size fits all so keep trying/varying and tweaking.
          First, not sure all your symptoms, second what and how are you taking the vsl? Third, are you running to the bathroom with or without the vsl, foods, etc? Sooo many factors, so little time!
          I ut mine in my power smoothie which I have for breakfast and lunch. I do add the critical care one and take that first thing. I try and mix it up.
          Be careful like I said with all those supplemental drinks and vitamins. The more natural and fewer the ingredients the better. Keep in mind the meds, too, can be causing some of the same symptoms they are trying to fix! UC irony, I guess. You also need to look up the Med side effects and read the surveys and Med posts on here from Adam and all us UC’ers. You will be sadly surprised.
          :-) Shelly.

          • libby May 18, 2013 at 12:26 pm #

            Shelly,

            my day: when i wake up I have to go to rr ( d and blood), ill take the VSL#3 and like 5-10 mins later I have to go to rr. 30 mins later ill take the pred and 30 mins from then ill take the sulphazaline. my mornings are usually 1-3 times in the rr and they’re usually blood & d. thru out the rest of day is usually one time after I eat sometimes they’re formed sometimes flaky. I’m also taking vitamin d3, b12, multi bit, lglutamine and curamin (boswelia & curcumin). I do feel like I’m taking a lot of stuff but I just want to get this under control.

            on the lglutamine I’m taking the Source Naturals namebrand I’m not sure that is fermented though. I just bought Jarrows Formulas which says that it’s manufactured by microbiological fermentation (I’m hoping this one will help better). I also just bought the Critical Care probiotic and also the Astaxanthin, I started the Critical Care today, might start the Astaxanthin tomorrow.

            libby

          • libby May 18, 2013 at 12:28 pm #

            Shelly,

            one more thing I’m also using the Canasa sup at bedtime sometimes I do use the rr in middle of night.

          • Carol from Colorado
            Carol May 27, 2013 at 12:07 pm #

            What book can you look up for MED side effects along with herbal medicines you are taking. I just want to know if they will work together okay.

        • shelly in maine May 18, 2013 at 1:17 pm #

          Libby,
          It sounds like you are doing everything you can. When i wasn’t sure if the vs was working, I just played with the times and amounts. Maybe try the critical care in the am first thing on an empty stomach and the vsl later or last at night.
          Write everything down so you know what you did and what effect. Our brains get so foggy and messing around wit the herbs and meds is too much to remember. Remember what I said about the meds causing issues. And read up on diets like the SCD. The stuff I was referring to before was more of that ready made probiotics drink and vitamins. Be cautious. Keep reading and researching especially on here…lots of valuable info and people-all of in the same boat.
          We’re all in this together. The suppositories have had good results for many. And hopefully you’ll get of the nasty pred. And eventually the other.
          :-) Shelly

          • Teanna
            Teanna May 28, 2013 at 2:00 pm #

            Hi guys, I just wanted to put a quick comment up here about probiotics. I’m currently taking homeopathic probiotics and (after asking my practitioner) I take one orally and one by suppository every morning and night. A few years ago I was taking Natren Probiotics which came in a powder form and I mixed with water. At the advice of a book “Listen to your Gut” by Jinni Patel, I purchased an enema bag and gave myself a few probiotic enemas before bed as well. Obviously I’m no expert and have no idea whether this is safe to do with all forms of probiotics, but it seemed to work well for me and was an easy (if not very fun) way to get it right to source!

    • Michael Hurst
      Michael Hurst December 7, 2014 at 12:06 am #

      Hey Bev, and everyone else I just saw this pop up in my email. I’m glad to see this thread is still active and you continue to help others learn how to successfuly fight this illness. I credit the protein shakes I drank that contained L-Glutamine with helping me delay surgery so I could give fecal transplants a chance. Ironically it was the colo-rectal surgeon who turned me onto the idea. My blood protein levels were too low to have an ideal recovery from surgery, so he told me to drink protein shakes. When I was able to taper off Prednisone and not have blood in my stool, I started to question why I should go ahead with the surgery when I appeared to be getting better. And then I found out about the fecal transplants 3 days before I was scheduled to have surgery and went ahead with them in June 2011. Today I continue to be symptom-free without any maintenance drugs or supplements of any kind, almost 3 and a half years later!

      In addition to my story on this site (and this thread) I’ve got a YouTube video and website http://www.fecaltransplant.org. My story is also a chapter of a book called “Good News for People with Bad News” by Nyema Hermiston a health care professional in Australia. Hopefully we can keep getting the word out there, I have also had dozens of readers who have privately emailed me to tell me about their success and ask questions as they fight to take back their lives, keep their colons and try to beat this thing for good. I think the media is finally starting to accept this now however many of us here as on the cutting edge and are willling to take responsibility for our health and spread the word!

      • Bev December 7, 2014 at 8:53 am #

        3 1/2 years Michael!! That is great!! I am into my third year as well…just on that fab probiotic and the l-glutamine. I feel very well.

        No meds EVER again, for me. Yes, I will say NEVER. They are mostly dangerous and do nothing for the real problem.

        Your last sentence tells volumes. Take charge of our own health…heck, we pretty much have to right? The medical community cannot help us. The only good thing for UC in conventional medicine is the colonoscopy so that any polyps or cancers can be detected early…

        I was wondering about you and how things were going!

        Cheers to you, Michael…cheers to you!!!

  6. sunny cape May 16, 2013 at 1:28 am #

    Hi Freddie, so sorry to hear what you are going through on humira. Has your Dr suggested Remicade? I’ve been on it for over a year (together with methotrexate) and it works for me. I got my life back. I have no side effects from Remicade apart from some tiredness and feeling a bit out of it on infusion day. I take the supplements as well – L-Glutamine and a very strong probiotic but can’t say for sure these are helping. The moment I get stress in my life my colon doesn’t feel as great – I think with UC the main thing is to reduce stress.(easier said than done haha). I wish you all the best and maybe if one drug isn’t working for you – try another – there’s no point suffering on it – UC is bad enough! Lots of healing to you x

  7. Karen May 17, 2013 at 3:15 am #

    I was feeling crappy today after a bad morning with my UC and came across this website. It has cheered me up so much to read all of your comments and feel I am not alone. I have been on Asacol about a month now (diagnosed 2008 – probably had a flare up each year since) usually they work pretty quick but seem to have made my symptoms worse this time. Also taking a good probiotic so I am going to try some of the many suggestions with my diet and wean myself off Asacol, see what happens. Will let you know. Thanks everyone for cheering me up! what a great site xx

  8. Ann May 18, 2013 at 7:27 am #

    Hi Karen, I study this site every day. Between the advice given by Adam, Bev and Graham I am blood free and med free since February 14, 2013. Didn’t become blood free until I tried the evoo. Went off if it for a bit and had two days of a little blood, went back on it and the blood went away immediately. I also take a multi, L-Glutamine, Vit D, and Omega 3. I avoid wheat products, eat yogurt but not alot of dairy. 25 years dealing with UC, on and off meds…hate them…will not go back if at all possible. Bev is right though, we need to get our colonoscopies as much as we all hate them. I am skipping mine this year since I turned 50. I’ve had more than my share. My goal is to be blood free for a year before I get another one.

    Hi Freddie, When my doc recommended the Remicade program to me I just about #$%@ my pants! I was bound and determined to find another solution…so far I think I have…there is hope! ;)

    • Carol from Colorado
      Carol May 27, 2013 at 12:04 pm #

      I might have to be on Humira and really do not want to do that! What is evoo? Have your doctors ever been ugly when you said you did not want to do those drugs. I might have to say that to my doctor. I am doing a light bleeeding in the morning and that is all. The Imuran did not work all that it should so that was why she said to start maybe Humria after the colonoscopy. I was in remission for almost 10 months and do follow the SCD. She has to look inside and check it out. I cannot see using that nasty stuff forever. It has terrible side effects. Humira scares me!

      • bev May 27, 2013 at 12:21 pm #

        No doubt Carol…..ALL of those immune suppressors scare the crap out of me, as well. I would never put them in my body…no matter what.

        That is just me…I am bot telling anyone else what they should do.

        Bev

        • Carol from Colorado
          Carol May 27, 2013 at 1:35 pm #

          I know! Do you follow the SCD at all and do you eat bread? I was wondering because in this book of the scd they a recipe for it but I have only been in remission for 10 months just about. Sometimes I wonder about all these books on food. Don’t eat this and do it that!!! I get confused about it. I have had UC for 6 years and I get really frustrated with all this mess!!!

  9. bev May 27, 2013 at 3:00 pm #

    I eat everything and anything that I want. The ONLY think I can’t eat a lot of is straight wheat, like a 100% wheat type cereal. I will actually bleed the next day!

    I am very fortunate in that I’ve never had to cut out any foods. When I was flaring, however, eating anything at all was hell.

    :)

  10. Sharon May 27, 2013 at 5:46 pm #

    After reading everyones comments on this and other threads….I LOVE my doctor. I have moved around a lot in the 23 years I have had UC so I have had a lot of different doctors. When I moved to Florida 5 years ago I decided to interview my doc before I had an appointment. We met in his office and I explained my disease and the treatments and scopes I have had. I told him I did not use maintenance drugs and knew how to get a flare under control using Asacol and if necessary(rarely) Prednisone. We agreed to work together as equals in my treatment. I was respectful of his credentials and expertise and he was respectful of my journey and personal knowledge. I have had GIs be condescending to me and demanding and I have had Gis personally call me to see if I felt better. My current doctor gave me his cell # and I text him when I am going into a flare. Less than half of the time does he even schedule an appointment. He has discussed any treatment I bring up including chinese herbs ( I never tried), yoga (awesome for stress), and Russian chaga tea (have used from Russian step mom). I am currently on Humira but at the time it was my best option. I take VSL#3 and plan to start the L glut. I hope to someday come off of Humira but it will be with my doctor’s guidance and his support. He actually doesn’t like for any of his patients to stay on meds without trying to wean when they get into “deep remission” for a year.

    My point is that if you don’t like your doctor, find a new one. Have an appointment before you are in a flare if possible. Be respectful but clear that you understand your disease and know your body. There are terrible doctors out there and wonderful doctors out there. My first colonoscopy was done by a doctor in his office WITHOUT any anesthesia. I swore I would never be tortured like that again. It took many years and a very kind and caring doctor to convince me that I would not feel anything if it were done properly. He then called me during my prep and followed up with me often through my flare. There are awesome doctors out there but you have to look for them and not settle for the first one on your insurance list that works 5 miles away.

    For those who have naturally managed their UC I think that’s great and at times I have done the same. My body has changed and I needed a break from constant flaring so I needed Humira and am grateful that it is available and that I was in control of my decision (again a respectful conversation in my doctor’s office). I hope to be among the “naturalists” again but will never sever ties completely with my doctor

    • bev May 27, 2013 at 9:58 pm #

      Excellent post Sharon! I know that there are very good doctors out there for sure. They are few and far between, but they are out there.

      I have gone through all four GIs in my small town…lol…(we are not the few nor far between)…I think we get the doctors who had a C or a D average in med school…

      I am so happy for you, and others on this site that have those good docs. Cherish that!

      :)

  11. Ann May 28, 2013 at 6:48 am #

    Hi Bev, I still feel pretty bad about that guy who yelled at you regarding docs/meds about a month ago, I’m sure you know which post I am referring to. I tried to calm him a little by agreeing with him that people respond differently to meds, foods and stress. I love all of your posts and think you are a great person for putting yourself out there and sharing your beliefs and successes about being med free. I am sure there are good docs out there but my guard is still way up about how they approach this disease. Best! ;)

    • bev May 28, 2013 at 7:00 am #

      :)

  12. Sharon May 28, 2013 at 9:17 am #

    Ann, I wasn’t around this site a month ago so I missed the rant. I am not digging my heels in against any person or personal treatment decisions. I just know that a lot of people read posts without commenting and I want to give hope and direction to those who may get discouraged trying to find a good doctor. For me, it is a balancing act of medical treatment, stress management, eating well, knowledge, and support. More than anything, I am the one calling the shots in my own treatment but I prefer to have a doctor in my corner.

    • bev May 28, 2013 at 10:13 am #

      And we so definitely need that on this site, Sharon!

      People need to know every angle and opinion on doctors, treatments, etc!!

      Please carry on. All information is valuable and so important.

      You are a great asset!

      :)

  13. Ann May 28, 2013 at 9:44 am #

    Hi Sharon, I think it is great for you to have a doctor in your corner. I wish we were all lucky in finding one.

  14. Sharon May 28, 2013 at 11:32 am #

    Thanks Bev. Ann, I agree. I certainly wish medical schools would start teaching nutrition and encourage new doctor’s to listen to their patients more so we could all benefit.

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No matter what, colitis flares don't last forever, don't forget it:)