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Too Many Supplements?

Introduction:

22-year old American living in Canada. Currently in school studying to enter the health care field. Skeptical by nature, I always look for the science behind everything I try. Only recently diagnosed with UC a few months, I’m still trying to figure out what works for me! My colonoscopy in May 2013 showed ulcers and inflammation in the rectum and sigmoid colon, with the rest of the colon clean. I’m most interested in trying complementary medicine that has been studied for efficacy.

Some more about me:

Food has always been a huge part of my life. I’ve been a vegetarian for five years (up until a few months ago), have worked on organic farms and community gardens for a handful of summers, have volunteered at food banks, and have always enjoyed cooking nutritious, whole foods. Not being able to eat fiber is driving me insane! I feel like such an important part of my life has been taken away from me.

Symptoms:

I’m currently in the middle of a flare up, though this one is less severe than the one leading up to my diagnosis. I’m having 4-5 loose bm’s per day, with some blood and some mucus. I also have some pain in my abdomen, and occasionally feel bloated and inflamed in that area. I also have some joint pain at various joints, but that very well could be unrelated.

Too Many Supplements

So, my first question, am I going overboard with supplements? Before I break out into the list of what I’m taking, let me preface with my situation. As an American living in Canada, I don’t currently have health insurance that covers me when I’m in Canada. So at this point, to see a doctor, I either have to travel back to the US, or pay out of pocket for a doctor in Canada. Luckily, if the situation gets too bad and is considered an emergency, I can see a doctor wherever I am and it will be covered. That’s how I had the colonoscopy and my initial couple of gastroenterologist appointments. So right now, I’m on Apriso (4 pills per day), and am just finishing up my second course of hydrocortisone enemas. After the first course of enemas, I thought I was put into remission, since I wasn’t having any symptoms. But after a blood test showing my inflammation markers were still up, the symptoms came back a week or two later. So now I’m back on the course of hydrocortisone enemas, but it seems like the symptoms aren’t going away. The doctor said that if this doesn’t work, I’ll have to go on prednisone or immune-suppressents. He said going on those medications means I’d need regular doctor’s visits and blood tests. So not only am I scared shitless about going on either of those medications, but I can’t afford all the doctor’s visits that I’d need. Hence my frantic search for CAM alternatives.

So, here’s what I’m currently taking for supplements. I’ve tried to limit it to ones that have been studied at least to some degree and proven effective, or at least that shows promise in clinical trials. Here goes: probiotics, fish oil, krill oil, digestive enzymes, spirulina powder, l-glutamine, boswelia, aloe vera juice, selenium, flax seed oil, curcumin, bromelain, aloe and vitamin E enemas, and a gelcap multivitamin (plus cranberry extract for recurrent UTIs). Does anyone have any feedback for taking this many supplements together? Does anyone see any possible interactions between them, or any other reason I shouldn’t be taking this combination?

I’ve also been trying to avoid nightshades, crucifers, legumes, whole grains, gluten, lactose, and anything with lots of insoluble fiber. I’m toying with the idea of trying the SCD, or some diet plan of my own that is even more strict than the SCD that avoids all of the above, plus any foods that are inflammatory. However, some of the supplements I am taking are illegal on the SCD, so I’m trying to weigh the benefits of the supplements (like aloe and spirulina) against the benefits of the SCD. Any input from people who ran into this problem would be greatly appreciated!

written by Sarah S

submitted in the colitis venting area




42 Responses to Too Many Supplements?

  1. Adam
    Adam July 21, 2013 at 6:14 am #

    Hi Sarah,

    Congrats for getting your workout on organic farms! way cool:)

    As for your questions about “going overboard” with taking so many supplements. I don’t think its possible for anybody, doctor guru, UC patient or anyone else for that matter to answer this question and be right all of the time. But, one thing that makes sense to me when trying to get to the bottom of medical questions is how to go about testing things out.

    For example, lets just say that one of the supplements you are taking is not actually helping you at all or possibly having a negative impact on obtaining remission. My guess is that would be pretty darn hard to figure out right now considering you’re taking so many. And unfortunately, its the same with western medications. If you don’t have a known history with meds(and even if you do since combinations throw things through a loop sometimes too…) its hard to tell what’s working best, worst, and not at all.

    For me, I’ve always tried to incorporate small changes to an environment that has been stable for a long time. It’s difficult (and an art as much as a science when you’re dealing with dietary changes and supplements) but I think it can be done. And the overall goal is getting down to the bottom of what works best for you.

    No matter what you end up doing moving forward, I hope you get the chance to jump into the medical world if that’s your passion. or start a kick butt organic farm someday too:)

    -Adam

    • Joan H
      Hope July 21, 2013 at 8:50 am #

      Hi Sarah-Compliments to you for looking into the invisible “other world” of probiotics and naturals with organisms that can help heal your gut! I have been in health care as an RN for 25 yrs now, and have seen the shift to naturals and probiotics. I’ve always had a deep respect for the hdidden world of bacteria and organisms that so many people don’t have the priveledge of seeing in action – either under a microscope or in the effect they have on our bodies — positive or negative. There is so much research out there to support the use of probiotics and natural supplements and food. What I think people can miss is the reality that the supplements, etc are in fact medicinal – people hundreds and thousands of years ago knew this and that’s why used them! I think Adam’s right when he said to try to incorporate small changes into an already stable environment. “Stable” can be stable in a “good” way or stable in a “not so good way”. Here’s what I mean – my “stable” over the last few years has been to be in one flare up after another! Bad stable :) But it started to change recently, over the last month or so, by adding one probiotic (I’m using Renew Life 15 Billion Adult) and after a week on that, I added Vitamin B Complex. I saw noticeable improveent in my symptoms within two weeks – from constant gut pain, bleeding, diarrhea, urgency and being basically in bed with a heating pad most of my after work hours, extreme fatigue, etc…to NO bleeding, no diarrhea (soft stool instead)and a great decrease in gut pain. I’m not in bed every day any more, after a month of doing this. It was all I could do to get through work any more, but I’ve been able to get back on the elliptical three times a week and to take walks and garden a bit. That’s a BIG improvement for me. So my “new stable”, without changing a whole lot on the supplement end of things, is a much better stable. Now I am incorporating diet changes once a week. Adam was talking about taking those small steps – I am approaching it like a baby’s diet, which I’ve mentioned before o the site, where you start with one food you know agrees with you – for me it was rice. Then after a few weeks of eating strictly rice, and rice only, I added pieces of cooked chicken. Gave my gut a week to adjust to that and see how it was working – just like with a baby you give one food at a time, wait and make sure there’s no allergy or intolerance and then add just ONE more the following week. If there’s an issue, you remove it from the diet and start again. For me, I recently tried adding blueberries (1/4 cup) per day for the antioxidants. i found myself in a flare within two days! SO, I stopped the blueberries, and this week I’m only wit the rice and chicken again til I feel better and out of the flare. Then next week I’ll add something else and see. Herbals, naturals and probiotics are definitely medicinal and need to be respected as such. So does our diet. I knew that as a health care professional, but it wasn’t til I was desperate that I really embraced it. Funny how we can all be in such denial :) Let me say something about prednisone and the enemas, etc, too—I’ve been on them,and still am taking lialda two tabs twice a say for maintenance. I may not need to continue these eventually, I don’t know. I’m keeping working on my diet and probiotics and things to repopulate healthy, helpful organisms in my gut. But there is sometimes a place for the prednisone and lialda and it’s individual. If it helps reduce the flare while you’re working on some other things, don’t neglect that either. The pharmaceutical companies have samples and programs if you write directly to them, or tell your dr you can’t afford them because of insurance. they’re more than happy to give their samples to their patients – they get them all the time from drug reps :) Just think – you’re in health care, or moving in that direction, we now take digoxin (lanoxin) for heart arrythmias – 100+ years ago, people took the same thing, only it was in plant form called digitalis! Sudafed for allergies used to be called ehphedrine when people took it (ate it) in plant form – so pharmaceuticals are sometimes just regulated, watched over by the FDA, things we used to take in plant form. It’s pharmaceutical or Farm-aceutical treatment – either way, I would simplify and see what works best with eliminating and adding things slowly. Too much of either can have it’s negative effects – so simplify and I wouldkeep checking in to this site. It’s been immense help to me on my way to getting better – All the Best! Hope

    • bev July 22, 2013 at 8:16 am #

      That’s so true Adam. When one is taking many things, it is so difficult to tell which one or ones is/are working and what isn’t.

      You almost have to eliminate one thing at a time, and for at least a few weeks to a month. That is very hard work. Small changes. It’s tough, but it’s really the only way you will know.

  2. Sujit July 21, 2013 at 8:31 am #

    Hi Sarah,

    I suggest you remove the SCD illegals without a second thought.

    Good luck and all the best for your healing.

    Regards,
    Sujit.

    • Jamie July 31, 2013 at 1:50 am #

      Agreed, remove the SCD illegals.

  3. joanna July 21, 2013 at 1:46 pm #

    I take a lot of supplements, too, but I keep a diary of everything I add, when I take them, bowel movements, so I can easily look back and notice if something is making me feel worse.

    you might be overdoing it but who knows? something is probably helping!

    you could probably get rid of one of the fish oils, enzymes, and alternate the others on certain days. do you find a specific thing helping?

    I follow scd, too, but I just started taking VSL again even though it’s not legal. I’ve had c diff too many times and needed something strong like vsl to help me.

    I just started bromelain but I’ve noticed ive had a lot of pain the past few days since I started it. i’m stopping it to see if that will help.

    • Jamie July 31, 2013 at 1:54 am #

      I would not get rid of the fish oils. Fish oil is suppose to heal the gut. The problem with to much fish oil is that it can cause very loose stools. If this is the case, then Jonna is right. Take out the fish oils and add back to help heal your gut when your system can handle it.

  4. Caroline
    Caroline July 21, 2013 at 1:57 pm #

    Joanna’s recommendation about keeping the diary is a great one – I did the same thing and it was a huge help to me. When I was diagnosed, I was seeing my GI specialist, a naturopath, and an acupuncturist. The number of meds and supplements was a little out of control to keep up with and it stressed me out – I also couldn’t figure out what was working and what didn’t. I have settled into what works for me, which is Apriso, VSL#3 DS, fish oil, astaxanthin, L-Glutamine, Vit D, and my chinese herbs. Sounds like a lot, but it’s way less than what I was doing – especially when I was on 2 antibiotics and prednisone on top of it all. I also do the Paleo diet, which has been really key in my healing.

    I will tell you – Aloe Vera juice tore me up. That is one thing that some people have success with but I have heard of it really irritating things for others. Just something to be aware of.

    I found this quote in the packet from my naturopath around the time of my diagnosis and it brought me so much peace. I was working so hard at getting well I think I was getting in my own way.

    “Relax! In the mad rush to be healed, people waste much time and money by not giving whatever therapy they are doing a chance.True healing occurs from the inside out, in it’s own time, and cannot be forced.”

    Feel better and keep us posted!

  5. Bec July 21, 2013 at 5:38 pm #

    Hi Sarah,

    This is tough stuff though listen to your body. I have had UC for 4 years and currently taking a short course of pred for a fliar. I take azathioprine (immuno suppres) and mesavant. Im feeling good at the moment …. prob the steroids! Though my GI doctor & myself are currently looking and what to keep me on now the flair has settled to aim for remission.

    I also decided to see a Natropath for the 1st time and I’m doing a FODMAP Diet. Google it, its similar to the Paleo that Caroline suggested. Its cutting out short chain carbs and fermentables.

    Best of luck on your journey! “If you travel a path without obstacles it probably doesnt lead anywhere”. Cheers

  6. UC Family Boy
    UC family boy July 22, 2013 at 5:22 am #

    All them supplements and more all can contribute to someone with IBD. But I feel the right supplement needs to be taken for the right problem, depends what you think you need to address. Leaky gut, gut imbalance, inflammation…

  7. Lynne July 25, 2013 at 5:02 am #

    Sarah,

    It’s the ongoing saga, isn’t it. What helps? What hurts? Am I taking too much? Not enough?

    I’m happy to say that I’ve gradually weaned off my meds (entocort). I saw my GI doc last week & listed all the many supplements I’m taking. He commended me for my efforts. But, he also stated that, if it were him, he’d ditch most of the supplements (since my list is so long) & just take Imuran. What?! Why? Because it works better, was his answer.

    I’m much much better than I was. But, I still have bad days (not as bad as they were), I still have bleeding (light), still have diarrhea but also have solids (yay!), and I feel better (most days).

    Taking so many supplements can become stressful. It’s complex … trying to keep track of it all, taking it at the right time (with food, on empty stomach, wait an hour before eating, etc). It’s also expensive in a straining way (for me anyway). I could take powerful meds for free right now, since I’ve med my insurance deductible & out-of-pocket expenses. But, I choose to pay up for natural methods instead, trying to heal my colon.

    And, since my deductable, etc., is met, I’ve decided to see a counselor (free to me through 2013) to sort through some stressful events in my life & learn to manage my daily stresses. It’s just another natural angle … another non-med approach … since stress can play such a big role in uc. I’m excited, because my GI doc recommended a woman who regularly counsels his patients with GI issues & how that affects life and stresses us out.

    I don’t really have any answers here. But, I hear what you’re saying & wonder if they may be any of my expensive supplements that I could cut out. And, although the natural methods may work at a slower pace, going the natural route sure beats the powerful meds that only serve to worsen us in the end.

    Good luck, Sarah. We’re all in this together.

    lynne

    • bev July 25, 2013 at 6:47 am #

      Hi Lynn,

      I’m not exactly sure of everything you are taking, but I am on the probiotic, the L-glutamine, astaxanthin, and LDN at bedtime. That’s four things.

      I haven’t told anyone this yet, but about a month ago, I thought I’d drop the LDN, because it’s actually a med, and it costs about $100 for three months. Relatively cheap, but I wasn’t sure it was really doing anything other than helping me sleep….well, was I wrong! I was fine for the first week and a half, then, day by day, UC symptoms started coming back! I was so scared and depressed…I never even started the LDN until I had already got remission from the probiotic and the L-glutamine! I am floored. Needless to say, I started it again, and within days, I am back on track, back in remission!

      I really can’t believe this. I never even mention the LDN when I tell people what I take, because I truly did not believe that it had helped the UC at all. I don’t know what the moral of this story is…I can’t figure it out myself…I just know that from now on, what ain’t broke, I ain’t gonna fix!! Never again will I try and drop anything that I am taking. I remember trying to drop the astaxanthin almost a few months back (it’s mainly for inflammation) and I experienced cramping within days.

      I HATE that UC is so precarious…that I am just one supplement away from a flare. It sure slapped me across the head, I can tell you. However, what was different about this mini flare, was that I knew I could get out of it with no meds…except that LDN, of course. Perhaps LDN really does work…I think you should all try it, if you aren’t already on it. That is, of course, as long as you need it. If you are in remission already, then don’t bother.

      You say you still bleed. You should not be bleeding, Lynn. At all. Apparently, that is not remission. After stopping the LDN, I started bleeding again, and having pain and cramping…and even urgency in the morning.

      Just thought I’d let everyone know. We are never CURED…the UC is lurking there always. I want to get rid of it once and for all!

      Bev

      • shelly in maine July 25, 2013 at 4:30 pm #

        Wow Bev,
        Almost missed that. So glad you caught it earlier rather than later. That is why I called UC the Grimm Reaper…it’s always lurking. That’s why I was/am so nervous about the antibiotics…I always feel like I’m one bad happening away!
        I think the LDN works on multiple levels and especially the sleep factor for you, maybe. You said you have been sleeping so well with that and you know our bodies fall apart without sleep and adds stress internally. Plus the way ldn works chemically.
        So glad you found what works. I know we had just discussed the whole “if it ain’t broke” thing! :-)
        Healthy thoughts, Shelly

        • bev July 25, 2013 at 4:54 pm #

          That’s kind of what I was thinking, Shelly. LDN supposedly regulates the immune system…which correlates with good restful sleep as well. It’s sure strange how I didn’t even take it until I already had the remission, yet when I tried to discontinue it, the UC slowly started creeping it’s ugly way back in…I actually THOUGHT that I slept just as well without it. When I stopped it, I slept just as well, which really confuses me. The only difference in sleep is, with the LDN, I fall asleep much faster than without it. Otherwise, though, I sleep like a baby either way, with or without it. Why, then, would the UC reappear when I stopped it?

          Can’t quite figure this all out…I just know, that with no side effects from it at all, I will most definitely keep taking it. Sheesh! I did not enjoy the UC coming back, that’s for certain!

          Love my LDN, I guess!

          • shelly in maine July 25, 2013 at 5:23 pm #

            Bev,
            So interesting. Hard to say, as we know, but you actually did an almost perfect check to see if it was working! That’s sort of how they do the elimination diet!
            The other factors you can’t ever figure out, like cold, flus, bad food. There is another big incidence of people getting sick and they don’t know what from. I heard this a.m. it may be grapes. It definitely is seeming like our heathiest foods are the riskiest, especially for us UC’ers,Cronies and other immune compromised.
            We can’t win can we?

          • bev July 25, 2013 at 8:42 pm #

            You said it Shelly! Just when we think we have won…well…

            Grapes?! What next, huh?

            I still think it’s weird that I stopped the LDN, and the UC symptoms came slowly back. I only started taking it to see if it would make me even ‘better’ after I had got remission!

            So weird…

  8. lynne July 25, 2013 at 8:05 am #

    Ugh, Bev. I’m sorry to hear that some of your symptoms returned without the LDN. Yuck. But, glad you’re back on track. I have talked to my GI doc about LDN. He hasn’t dismissed it.

    You’re right. I shouldn’t be bleeding. I do not consider myself out of the flare, yet. But, I’m thankful that I’m so much better than I was and hope I’m healing. Here’s what I take daily:

    6 VSL#3 probiotics
    1 Renew Life Ultimate Flora 80 bill probiotic
    6 heaping scoops of North Coast Naturals Fermented L-Glut daily (3 in morning, 3 in evening)
    6 oz Herbalife Aloe Vera juice (4 oz in morning, 2 oz before bed)
    Multivitamin
    Iron
    Vit D
    2 Curamed (curcumin, a natural anti-inflammatory)

    I also do oil pulling with coconut oil daily, and I just (yesterday) started taking quality fish oil capsules.

    Sometimes I have really good days. Unfortunately, they are sometimes followed by difficult days that confuse me. But, generally speaking, I’m MUCH better than I was awhile back.

    I’ve only been completely off my meds for 2 weeks. I do feel concerned that I could still relapse. I think learning to manage my stress better will help, thus the effort at counseling (I start next week). I’ve had some pretty traumatic events in my life the past 4-5 years. Strangely, my uc stayed in remission (med free) the entire time until 2013.

    lynne

    • bev July 25, 2013 at 8:53 am #

      You know Lynn, to me, it doesn’t seem like you are taking any USELESS stuff…you know what I mean? The probiotic is necessary for good bacteria, the L-glutamine is necessary for the healing of the ulcers, the curcumin , fish oil and vitamin D are for the inflammation (I suppose you could drop one of those)…

      I understand how you feel…I was so upset and confused when my symptoms resurfaced…it really got me down…I literally could not believe that I am that close to relapse! What a shocker for me…I was so freaking sure that I had ‘beaten’ UC…I guess we never really can. We are simply ‘prone’ for whatever reason, whether it be stress, illness, etc. It is something that I (we) have to accept and live with and we can’t let that get us down. I have made peace with what has just happened to me…and I’m moving on! When I had that ‘flare’, I was afraid my summer (and thus my husband’s summer) was going to be ruined. Stupid UC. It really can put a damper on things.

      Anyway, please don’t get it into your head that you will relapse after going off the meds. I truly don’t think the sorts of meds that you were on really help anyway. LDN is different, in that it is almost like taking something natural. All it does is ‘regulate’ your body’s rhythms. That’s why it is recommended to be taken at bedtime. When we sleep, our bodies heal and repair and regulate. I am a believer in it, now.

      Bev

      • Ann July 25, 2013 at 11:32 am #

        Hi Bev and all, I am off to the health food store again today. It has been a little over a month since I started the probiotic with L-Glutamine in the morning and I am sorry to say even though I have had a few good days, I am not where I want to be. I had quite a bit of blood yesterday and just feel awful. Tired, achy, trips with blood to the bathroom…UGH! I am going to add MSM to the mix and see how I do. Maggie and other UCer’s take this along with the other supplements, I am hoping this will help me too. Back to the drawing board!

        • bev July 25, 2013 at 12:16 pm #

          Darn it! Really Ann? I am so sorry to hear that. I am okay for the moment. This just reminds us how precarious UC really is. I feel like I am always just teetering on the brink…

          Oh well. I still won’t do meds!

          Bev

      • shelly in maine July 26, 2013 at 4:54 am #

        Bev,
        The LDN thing is so interesting. Your body had probably completely adjusted to all the positive effect or like I said, some unknown factor at, coincidentally, the same time?? Who knows, but if it works with it…awesome.

        Stay positive as always. I know I am always spouting off my soapbox that UC is a forever disease, with no real cure-for now…but we can still control the symptoms. It just proves that you can never let your guard down with UC (remember my cartoon thatAdam drew for me…grimm reaper UC…we just keep hoping to increase the distance from him!)…no matter what you are treating it with. And that’s not necessarily a totally bad thing… it means we just keep working harder to find all the natural ways…probiotics, herbs,fmt, diet, exercise, etc, etc…we all practically are Dr.’s, nutritionists, counselors, scientists and a community that continues to battle the UC battles and ultimately hope to win theUC war! :-)

        So get back on your positive soapbox and spout what you’ve learned recently. (I know that not all Dr.’s approve ldn and it may be hard to find a pharmacy, but there are some studies on it not connected to their site. I think there are actually a lot of blogs and sites of real users of ldn, as well.)

        Best, Shelly. :-)

        • bev July 26, 2013 at 7:24 am #

          Shelly, you may have hit the nail on the head with the LDN! Whatever positives it was contributing to me, I must have gotten used to, and thus, need to stay on it to keep in remission.

          Grimm reaper for sure! This sure taught me a huge lesson. UC is never gone…until a cure is found anyway…but you are so right…we can control it without HEAVY meds. By that, I mean steroids and biologics. They can be more dangerous than the disease itself, I feel. I am so happy that I can control UC myself. We all can! It just takes time and patience…oh yeah…and stick-to-it-ness.

          I feel so confident about having UC now. Years ago I was running scared and believing everything the doctors said.

          Have a great weekend, my friend! Oh…how is your gal doing? Is she feeling any better? Do you know any more yet? Imagine you two going through another ‘deal’ together. At least you have each other. It’s easier to empathize when you’ve had a condition yourself. I just wish us all peace, health and happiness and REMISSION :)

          • shelly in maine July 26, 2013 at 11:49 am #

            Hi Bev…so glad you put your Bev hat back on! :-) All’s good and we have to convince ourselves of that.

            Thanks for your thoughts and asking. She had new MRI’s yesterday, with and without contrast and awaiting an appt. with a new neurologist soon. She is a curious case, and her Neuro. here and New Hampshire just don’t know what to do..so we’re keeping our fingers crossed we start back to school/work at the end of August.

            It is better to go through things together, except the extra pressure that at times my flares get to a point where I miss work and can’t leave the house to even make it to a store and she’s not driving right now. Friends and family offer, but it gets so you want to save up your favors. We asked for many by the end of the school year and i had to miss work or have someone keep track of her to be sure she is safe. It’s the unknown with all this plus no diagnosis. At least with UC I guess there is some predictability. I was also less afraid of surgery, but now I can’t rely on her so it is higher pressure…some blood, mucous and urgency, but not going to panic. Chinese medicine tends to focus on 1 thing so dealing with the ear and sinus stuff.

            Thanks for all your positive healthy thoughts…much appreciated and needed! :-) So right back at ya! Shelly

          • bev July 26, 2013 at 1:29 pm #

            :)

    • shelly in maine July 26, 2013 at 4:38 am #

      Hi Lynne,
      It sounds like more tweeking. Rmemeber that some people have trouble with aloe. I only use a little for a while and then I stop. Not sure about the l-glut dose. Could easily be one of those. Thinking about trying 1 of those first maybe before adding anything new.
      Just a thought depending how your symptoms are.
      Best, Shelly

  9. Ann July 25, 2013 at 12:31 pm #

    I hear ya…I’m still wanting to be med free too…I guess we are lucky since the flares are not so bad they are forcing us to use the meds even though I do use the Canasa suppositories to keep the flare at a minimum…it’s sometimes hard to count the blessings…I also wanted to comment about what you said about colitis ruining your summer…my flares are often in the summer and I have those same feelings…I almost can’t wait until fall because sometimes change of season changes the flare…it often puts me in a flare or takes me out of it! Go figure!

    • bev July 25, 2013 at 12:49 pm #

      Right? When everyone else is enjoying summer and partying, I am often too ill as well! Well, not this year…lol…I’m so fortunate that I got back to where I was before I stopped the LDN. Have you tried that yet? It really is quite amazing that it helps me as much as it does. I never thought it did anything for my UC until I went off of it. I know I am anti-med…but there really are no side effects with LDN…and I get every side effect there is and even some that nobody has ever had.

      Just a thought.

  10. Ann July 25, 2013 at 12:51 pm #

    How do I get LDN? Is it a prescription? What is the dosage?

  11. bev July 25, 2013 at 1:04 pm #

    Yes, Ann, you do have to have a prescription from your doctor.

    On the LDN website, the dosage recommended is 4.5, but I am only on 3.75 because they base the 4.5 on a 150lb person. If you read the literature on the site (it is a great site), they recommend a calculation of dosage by weight. I am about 125 lbs, so I calculated the dosage myself based on the formula on the website. Then I went to my GP and asked for a prescription in that dose. He wasn’t keen on LDN, as he is always skeptical, but he wrote me the prescription anyway. He is eating his words now, as it really does help in a big way! You do have to get it from a compounding pharmacy, though, as it has to me ‘made’ up.

    Cheers,
    Bev

  12. Ann July 26, 2013 at 8:32 am #

    Good Morning Bev and Shelley, I’ve been reading your comments since yesterday. All good points. After sleeping on it, I decided I am going to try the MSM first. If that doesn’t work after one month I might start looking into the LDN. I am not sure if I will be able to convince by doc to prescribe it and I really don’t want prescription meds if I don’t have to. I felt terrible yesterday but when I pooed last night before going to bed, there was no blood in it. The day before, I had quite a bit a blood. It’s mind boggling on how you can have blood one day with a bm and no blood at all the very next day when going poo! I feel better today. I upped my L-Glutamine and am having oatmeal for breakfast, avacado withe evoo for lunch and a normal dinner with no nightshades or bread of any kind. I really blew my diet last weekend because I was on vacation…maybe things are looking up this weekend. The roller coaster continues… ;)

    • bev July 26, 2013 at 8:50 am #

      Good morning to you Ann!

      It does boggle the mind that one day you can be blood free and the next you can have a lot. This stupid stupid condition. I hate it. I am a bit miffed lately about this whole UC thing. Even though I am ‘back’ where I want to be, I am keenly aware of how easily it is all lost.

      We get feeling so good and we think we are sort of ‘normal’ (whatever that means) again. Then…BAM…right in the chops…we can have a setback. I’m so ultra sick of it! It’s stressful just knowing that we are teetering on the brink all the time…can’t let your freaking guard down for one minute! What a way to live. Yep. I’m pissed…but always optimistic…I promise!

      Something HAS to be done for this condition. Fecal transplants should be at the forefront right now, or at least a clean fecal enema or pill. I am almost certain it is the only way to truly eradicate UC, as well as some other bowel conditions.

      Keep going Ann…no matter what. If you don’t have to buy and take LDN, that’s all the better. Like Shelly mentioned…I think my body got used to it, and was not at all pleased when I tried to discontinue it. Since they are no side effects, short or long term, I’ll stay on that bandwagon.

      Happy weekend all!
      :)

    • shelly in maine July 26, 2013 at 11:53 am #

      Ann,
      Good luck..fingers and toes crossed! :-)

  13. Sharon July 26, 2013 at 5:35 pm #

    I haven’t posted as much lately since the kids are all home during the summer and it gets crazy. Bev, so sorry to hear of your set-back. I have never considered myself “cured” even when I had years in remission. For me, I need to live without fear but with a healthy understanding of my body and my unique needs. I have quoted before my favorite Bible verse “Who by worrying can add one hour to his life?”. We all know stress can throw us for a loop and yet sometimes our biggest stress is what to eat, how to manage this disease, what to take, etc. Kind of a catch 22. I am really learning to be peaceful during the ups and downs of this disease. Sometimes I can tweak my diet or add supplements and up the probiotics and see a huge turnaround. Sometimes, I get sick no matter what. I dropped my HUmira a couple of months ago, started to feel the rumbling in my gut and took the VSL#3, L-glut, Astaxanthin, protein, and iron and dropped all fiber, drank more of my meals and stopped almost all processed foods. I feel great again and haven’t taken ANYTHING in over a week. I am eating reasonably but not restrictively. When I flare again, I will go back to this treatment. If that doesn’t work, I will modify my diet much more. If that doesn’t work, I will take Prednisone or whatever medicine necessary to attain remission.

    I refuse to let UC take my peace. I will not be afraid of what may happen next time or in the future. I will enjoy remission when I am blessed to have it. When I am sick, I will lean on this awesome community, look for answers, make changes, work with my doctor, and pray. My body may be sick but UC can’t touch my soul.

    • shelly in maine July 26, 2013 at 5:39 pm #

      Sharon
      :-)
      Best, Shelly

    • bev July 27, 2013 at 7:27 am #

      Thanks Sharon…and I hope you are enjoying your summer.

      I am okay now, but it sure smacked me right in the chops. I am…we are…THAT close to a flare at any given moment.

      Bev

  14. Sharon July 26, 2013 at 5:46 pm #

    Oh,btw, BIG news for me which may help some of you. I have been trying to convince my insurance company to pay for my VSL#3DS. They categorized all the VSL probiotics as alternative therapy and declined payment. I was trying to get them to re-categorize the VSL#3 DS as a prescription drug since it does require a prescription. After many phone calls, I finally got the right person and said the right thing. Turns out, I kept going through the pharmacy side of my insurance. Once I used the phrase “medically necessary nutritional food supplement”, the rep had an “Aha moment”. This does not go through “pharmacy” it goes through the “medical” side of my insurance. The side of insurance they use for “medical devices” and “nutritional support” is different (and apparently unknown to the pharmacy department). The only catch is that my doctor has to pre-certify it then I will get 80% coverage after I meet my deductible. The down side is that my doctor’s office tried to pre-certify and got a clueless rep. The nurse at my doctor’s office is on vacation but I think I have it straightened out for her when she gets back. Hopefully, this will help some of you when dealing with your insurance company :)

    • shelly in maine July 26, 2013 at 5:56 pm #

      Sharon,
      I guess I should be very quiet, but I had found a code for my Dr. -my primary care and he submitted that with little problem. It took me a while to finally find that code, but after searching and searching I did. I’ll put it in another post because it will get held up in moderation.
      You have to scroll down to where it says vsl DS Rx codes. :-)

      • shelly in maine July 26, 2013 at 5:58 pm #

        http://www.probiotics-lovethatbug.com/vsl3.html

        I hope this is current, if not there must be something else out there.
        I meant quiet because we are always nervous about Anthem changing their minds! :-)

        • Sharon July 27, 2013 at 4:31 am #

          Thanks Shelley. My last company paid for my VSL and I only paid $35 for 6 boxes of satchets. I have always used the DS and my doctor told me it was the only version the insurance would pay for. Hopefully, I can get this covered again. If not, I’ll switch to Bev’s kind.

          • shelly in maine July 27, 2013 at 4:35 am #

            Sharon,
            No problem…I hope that still works. I just pay a copay and my Rx is written for the 4 sachets a day.
            Have a great weekend! :-)

    • Joan H
      Hope July 26, 2013 at 6:05 pm #

      Sharon – Thank you for posting this. I was just thinking about how we get coverage – at least in part – for antibiotics and other pharmaceuticals, and often we have to have “failed” those pharmaceuticals to get insurance to approve what they call “alternative therapies” when we know it works for us. It’s frustrating because I pay so much in monthly to have health insurance and then they tell me my “Farmaceuticals” won’t count in the coverage. I also haven’t technically failed (FULL OUT HOSPITAL FAIL) the other meds the dr has prescribed. They are keeping things at bay right now, but much much better with the probiotics and vitamins, etc…those Farmaceuticals really add up! I’m going to see if I can work with them based on what you just wrote about the medical side of the insurance with “nutritional support” – makes sense. Who knew? They actually had that in there with the DME’s (Medical Devices)? Thanks for sharing that info :) Hope

      • Sharon July 27, 2013 at 4:32 am #

        Yes they actually categorize it under medical devices. I thought it strange but as long as they cover it they can call it whatever they want :)

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