Making a Change and Need Advice about Supplements: Please Help

Introduction:

36 and married with two young children. Current stay at home Mom and part-time supervisor of student teachers for a university. Former high school teacher…couldn’t imagine doing that now with my current symptoms!

Some more about me:

I am very active…chase around two toddlers, exercise and run regularly, volunteer a lot. Former junk food junkie, but changing my ways now.

My Colitis Story:

I was diagnosed about seven years ago. Flare ups came and went, but not really a big deal and didn’t even treat with medication. After my second pregnancy, I have been unable to control my flare ups for the past year. Fortunately, I made the change from teaching full time to staying at home with my children, so I have not had to deal with the fatigue, pain, and inconvenience while at a place of work, but it has been pretty miserable not being able to keep up with my babies the way I should. How do people with UC work in a place of business???

I have been on an unending combination of Asacol / Lialda, Prednisone, enemas for the past year, but I am looking to get off the medications and try to treat this with a change in diet and with supplements.

I have just started a gluten free diet and would love advice on what supplements to take and how much. My doctor has never even mentioned any of the supplements I have read about on this site, so I would really appreciate any advice you all can give me to get started on a good regimen. I hate the meds and they aren’t really working and I do not want to go to the next level of immunosuppressants my doctor is suggesting.

As a stay at home Mom, I know I have a lot of continuous stress in my life. “Rest” and “relaxation” are not in my vocabulary with a three year old and a one year old on the loose. Vacations without the kids and spas are a little out of the price range, but I find peace in running. I think yoga might be a good source for de-stressing, too. I would love to hear my other ideas you might have!

Thank you all so much for your advice. I am determined to get this in remission through diet, supplements, and a little less stress!

written by Lindsey

submitted in the colitis venting area





101 Responses to “Making a Change and Need Advice about Supplements: Please Help”

  1. AngelaMarch 2, 2013 at 7:04 am #

    Hi Lindsey,

    Sorry to hear about your flare! It is important when you have UC to keep up your vitamin intake. While you make eat extremely healthy, when you have UC you’re ability to absorb nutrients is diminished (especially in a flare) so you need to add supplements on top. Take a multi-vitamin (I take Women’s One a Day) plus Vitamin C, B12 (take with food as its fat soluble), Calcium, Vit. D. and Fish Oil (Omega 3 oils are fantastic for you!)

    Bev and others will be able to tell you about which pro-biotics to take as well as additional supplements like L Glutamine.

    My only other recommendation is to avoid artificial food coloring, anything with a a lot of preservatives in it, and avoid pop as they as can irritate your intestines. Likewise only take tylenol (acetaminophen) if you are having pain. Advil (ibuprofen), Aleve (naproxen), and aspirin which are all NSAID pain relievers can irritate your intestines as well. My doctor told me not to take them at all.

    Good luck!

    Angela

  2. MikeLMarch 2, 2013 at 3:09 pm #

    Hi Lindsey,

    I’m also testing a gluten free diet at the moment, which brings me somewhere between the SCD and the Paleo diet. Paleo has an “autoimmunity protocol”, http://robbwolf.com/what-is-the-paleo-diet/, but I’m cheating and eating scrambled eggs every morning. Frankly, I don’t know what else I should have for breakfast. Maybe you’d want to look into that?

    Please keep us posted about your gluten free diet. I’ve been avoiding grains for about two months now. At the same time, I’ve been taking some extra medication to fight a stubborn flare, so I can’t really say what’s medication and what’s diet – but I have seen some pretty crazy improvement so far, my bowel movements have been better than in years. Happy times.

    Back to your original question: Robb Wolf, the author of “The Paleo solution”, recommends Vitamin D, Magnesium, Omega 3 and a few more things. Some of the recommendations are far higher than the recommended daily dose and I have a hard time finding e.g. Omega 3 in the concentration that I would need. Maybe it’s easier in the States.

    I’d also recommend probiotics and hopefully Bev will chime in and tell you what brand she uses.

    Well, good luck, get better soon!

    Oh yeah – some of us here have bad reactions on Asacol (Mesalazine). Might be worth checking out.
    I tried Budonefalk / Budenosid for the first time – it stopped the blood after 1,5 treatments.

    • joannaMarch 2, 2013 at 6:24 pm #

      Mike, when i tried the AI protocol, i dropped eggs for meat and veggies breakfasts. i got used to it after a few days and wondered why i hadn’t been eating this way for all along. it’s SO much more filling than eating eggs. i tried to reintroduce eggs twice after my AI challenge, but my body doesn’t like them. i’ve been egg free since- i do miss the taste and hope i can add them back in if i get healed.

      • MikeLMarch 3, 2013 at 3:39 am #

        I’ve been thinking of that, but since I eat meat and veggies for lunch and dinner there’s a whole lot of cooking going on here already :) Will try it at some point though. Thanks.

        Hmm not to go all Anthony Robbins on you, but try switching “IF I get healed” to “WHEN/AS SOON AS I’ve healed myself”
        I’m a sucker for psychology and NLP and have noticed that small vocabulary changes like that help me :)

        • joannaMarch 3, 2013 at 3:04 pm #

          you’re right, mike. it’s just that i’ve been sick for so long that i don’t know if i’ll get better. “when” just seems to get my hopes up.

  3. bevMarch 2, 2013 at 3:20 pm #

    Hi Lindsey…I am Bev…

    I recommend a GOOD probiotic…one that is for we UCers…not just a regular old run of the mill one. It should be at least a 50+ billion strain one…(I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE). You must take the probiotic on an empty stomach with water…and it’s even better if you don’t eat for at least a half an hour after. Then, it can REALLY do it’s job! I take mine as soon as I get up, then I exercise, so I don’t eat until after that. If it’s a problem and you have to eat right away in the am, get up at 2, 3, or 4am, take the probiotic, and go back to bed. Easy!

    My second recommenfdation id fermented L-glutamine powder…the instructions are usually right on it. I take that an hour before lunch, so, again, empty stomach if possible. I mix the powder in a bit of juice, so I can’t taste it.

    Lastly, I think making sure taht your vitamin D levels are good is iimportant (you can get a blood test), and if they are low, take at least 5000 units of D per day until your levels are good, and then you can drop that down to 1, 2, or 3000 units. Vitamin D is important for a bunch of stuff, but in UCers, for inflammatiom. The higher your levels, the lower your inflammation.

    I was on asacol, and enemas for 14 years straight because my doctor said I had to be on meds for life. They actually made things much worse. The doctor recommended immune suppressors and prednisone, and I thought…no freaking way…I started the probiotic, and started feeling so good, I discontinued the meds on my own. Cold turkey. I’ve never felt better! I added the L-glutamine (because I still had a bit of bleeding and it heals the mucosa of the colon), vitamin D, and another natural anti inflammatory called astaxanthin, and I’ll never go back to meds…no matter what!

    (By the way, I take the vitamin D and one 4mg capsule of astaxanthin right while, or right after I eat lunch, because they are best absorbed with fats).

    I agree with getting off of the meds…they don’t work for very long, so what’s the point? They almost always eventually fail, and then you go on to the next one and the next one…who needs that, right?

    Cheers
    :)

    • AnaApril 15, 2013 at 6:15 pm #

      So, got L Glutamine from Jarrow. The dose says take 1/2 tsp (2g) mixed with some liquid on an empty stomach. does it sound about right?

  4. joannaMarch 2, 2013 at 6:25 pm #

    if i were you, i’d base my supplements of off my bloodwork. when’s the last time you had any done? it would be pointless to take ones that you don’t need.

  5. Michelle from Arizona
    MichelleMarch 2, 2013 at 7:48 pm #

    Hi there! I have been dealing with UC for about two years and have found relief by using supplements and following a Paleo/SCD diet about 80% of the time. I gave up dairy first and then all the wheat. I find that the wheat is tougher- but I definitely feel better when I am compliant. I take a probiotic daily and I also take digestive enzymes when I eat something (bread) that I know will give me problems. The digestive enzymes have really worked well for me. Both the probiotic and the digestive enzymes I get through Andrew Lessman through HSN.com. Following this approach I have been medication free for almost 8 months. I wish you well and please keep us posted on what is working!!

    • AllisonMarch 5, 2013 at 1:06 am #

      Hey
      I agree on the Paleo/SCD mix… it works for me & my kids, too.
      I am dairy and gluten free (I do make ghee (protein free butter) and yogurt). Certain cheeses are okay too.
      I eat grains but very moderately.
      Agreed on the digestive enzymes… I like Rainbow Light from Vitamin Shoppe.
      Also, I have been taking liquid nano-supplements… Iron w/ Vit C & a multi-mineral available through the listen to your gut website… they get absorbed before they reach ur intestines so no malabsorption or constipation or tummy upset.
      I’ll have my iron checked in a month & keep you posted on any improvement!
      Probiotics definitely… get quality refrigerated ones. They are pricy but worth it.
      I try to eat fermented foods too. Bubbies makes great sauerkraut and relish.
      I am tapering off prednisone after an 8 month flare-up and also determined to stay off asacol/lialda like my doc is trying to push on me. No way… scared of that stuff but also scared of another flare…
      So, going to try to avoid the eggs for a month though because I eat a LOT of them! I feel like I am always in the middle of a detective mystery… HAH!
      Best of luck!

      • AnaApril 14, 2013 at 12:50 am #

        Hi Allison,
        My daughter has UC. During the flare-up she goes anemic. We tried to give her proscription strength iron , but it made her bleed more. Mso we found heme-iron Proferring, which she tolerates well. However, it’s hard to say how effective it is. After the flare up her iron went up. She used Megamulti Mineral from Solaray and Floradix liquid iron supplement. Her iron levels went up quickly (she doesn’t eat any meat either). Do you take iron supplements during flare ups? Which one?

        Often times it feels like we are in the dark…looking for the right solution.

        • bevApril 14, 2013 at 7:15 am #

          Ana…just throwing this out there. I am always borderline anemic…not from the UC any more because I’m in remission, but from those ‘lady’ things (can’t wait til it’s gone for good). I take that liquid Iron Smart (you can look it up online) that tastes like caramel. It never messes with my GI tract, and it does not make me nauseated, which is huge for me, because every other iron supplement that I’ve taken, has.

          It seems to work…it brought my iron levels up.

          Cheers,
          Bev

          • AnaApril 14, 2013 at 4:40 pm #

            Thank you, Bev,
            We’ll,try. I looked it up and it has agave syrup. I wonder if ithe sugar can be troubling for the UC gut during the flare-up.

          • bevApril 14, 2013 at 4:56 pm #

            Mmmm…Good point.

        • JackieMay 2, 2013 at 11:06 pm #

          Hi Ana
          My son has UC and we tried the low residue diet that seems to work for him.We also give him Vit D amongst other things .We tried the probiotic on a study from the hospital but that just brought back his UC with gusto !!!!
          Hope all is getting a bit better x

          • AnaMay 3, 2013 at 1:47 pm #

            We really don´t know whether probiotics work or not. From the studies I read on VSL (you can find them on PubMed), the results were positive. However, you must continue taking them even after the flare has gone. I’m also not sure about the dosage. The doctor in UC San Francisco wanted us to take 6-8 a day for my daughter.

            I thought that there was a difference when we switched to Ultimate Flora once daily and reduced VSL to just 2 a day. Although the recommendation on the box says take with food, we started following Bev’s advice to take it on an empty stomach.

            As to the diet, more or less my daughter follows Dr.Fuhrman’s initial protocol diet for UC—no animal products, and no grains at this phase, no dairy; vegetable (gentler ones, with less fiber) soups and green juicing. It worked in the past, now it’s taking a little but is improving perhaps thanks to other things we implemented too.

  6. LaneMarch 3, 2013 at 6:52 am #

    Hi Lindsey,

    After being on Lialda and enemas, I decided to go the natural route. I follow Bev’s regimen and take no medicines at all. I was having problems back in August of last year and then began taking a probiotic (Ultimate Flora by RenewLife) L-Glutamine, astaxanthin, multi-vitamin. Recently I’ve added Prebiotin (which I mix with juice or cereal). I also take Vitamin D and a fish oil pill. So a total of 6 natural pills but no meds. I’ve been doing this since August of last year and so far have had no episodes of bloody stools or mucous, etc. I was having these symptoms before I started Bev’s routine. Let me say this, everyone is different and you must find out what works for you. I eat just about everything. No special diet but I am a vegetarian so no meat for me. I stay away from fried foods and try to stick to fruits and vegetables. I will be seeing my Primary Care Physician this week but my GI doctor told me to check in with him in 6 months.

    • MariaApril 4, 2013 at 5:54 pm #

      Hi Lane, just curious, when you started on Bev’s regimen, were you on medication first and then eventually weaned off the meds as you started the supplements?

      • LaneApril 5, 2013 at 5:51 am #

        Hi Maria,

        Yes, I was taking Lialda (my GI doctor gave me a lot of samples) and I did try them for about a month but they were not working. I came across this website and somehow saw Bev’s comments about what she was doing. So, I decided to give it a try and went cold turkey (went off all medication). Oh, I was also using hydrocortisone enemas as well because I had bouts of bleeding and mucous. I started taking supplements and then added Prebiotin along with the Renew Life Ultra flora (I use the 30 billion for seniors) and it took about a month or so and then no bleeding or anything. So, I take these supplements everyday: 1 tab of Astaxanthin, 1 tablet L-Glutamine (I use a capsule not the powder form like Bev does) 1 tab Vitamin D3, 1 multi-vitamin (I buy the Women’s formula from Trader Joe’s) 1 fish oil tab and that is it for me. My symptoms disappeared in about one to two months. I no longer do the hydrocortisone enemas either. I also recommend Prebiotin (it was developed by a doctor) and I mix this with whatever I drink in the morning, i.e cocoa or orange juice. You can google Prebiotin on the website for more information. I have not had any symptoms since August of last year. Best wishes to you Maria!

        • bevApril 5, 2013 at 7:26 am #

          Like Lane, I also take astaxanthin every day…along with my vitamin D…they are both anti inflammatories. I always forget to mention asataxanthin, but I think it’s really an integral part of my regimen. I have tried to stop taking it every so often, but I actually get a bit of cramping when I do, so I go right back on it!

          :)

  7. Anna in DC
    AnnaMarch 5, 2013 at 8:49 pm #

    Sorry to hear of your struggles. Definitely L Glutamine. But what I would urge you to do before beginning any supplements – is to look into the GAPS diet. THe introduction phase is VERY hard but there have been countless success stories of people who are actually HEALED from eating this way – it’s a lifestyle change, but so worth it to be off of medication and to have a healthy you and a healthy family as a result! I am sure you are so busy as a mother, but at least look into it!

  8. LindseyMarch 12, 2013 at 4:43 pm #

    Perfect timing! I had no idea my story had been posted and I had received all of this great feedback. I have been going through a rough two weeks: tired, sick, sad. I have been gluten free for six weeks now and just today I figured I might as well give up on that plan since I was feeling bad…but I happened to browse this site again and see my post and these supportive responses! I am going to hang in there for another six weeks and see how it goes.

    I have recognized a pattern with myself. When my UC gets the best of me, I start getting less sleep, less sleep means exhaustion which leads to less exercise and poor food choices, all of these things make me feel even worse and then I feel hopeless and sad. Even when my UC is bad, if I’m taking care of myself, I am in much better spirits. Just need to remember that and keep up the good fight.

    I bought many of the supplements / vitamins / etc you all suggested today and will begin that regimen in addition to gluten free. I will also get back into taking better care of myself. MikeL, it is encouraging to hear about your success, and Bev, you are so informative and I appreciate it! Joanna, I have not had blood work done lately. My doctor had ordered it…and then life got in the way! I promise to get that taken care of. Michelle, I have thought of going dairy free, but one step at a time, I suppose.

    Thank you all for the support. The most helpful thing is knowing that I am not alone! I will keep everyone updated?

    • bevMarch 12, 2013 at 8:46 pm #

      That’s right Lindsey…you are NOT alone.

      Isn’t this site the best?!

      Bev

    • MariaMarch 27, 2013 at 3:36 pm #

      Hi Lindsey, just curious to see how things are going after you’ve started on the supplements? I started on fermented l-glutamine for the first time today, Im totally new to supplements/probiotics, but Im really praying that Ill start to notice a change soon.

      (btw, I was diagnosed with proctitis about 3 years ago, and have noticed worsening symptoms over the last few weeks)

  9. LindseyApril 4, 2013 at 10:06 am #

    Hi, Maria –
    I just started the “good” probiotic Bev suggested about a week ago, and I picked up the L glutamine powder today. I will keep you updated. Since it’s been a week or so since you posted, how are things going for you?

    • bevApril 4, 2013 at 12:24 pm #

      Hi Lindsey….PLEASE keep us updated….we all want to know if it works!

      I think a lot of people on here get better, and then don’t visit the site anymore to let us know!

      Cheers,
      Bev

  10. AnaApril 6, 2013 at 12:24 am #

    Great discussion!

    Bev, what regimen are you following? Is it GAPS or SCD? Or sth else?

    My 15 daughter is having a flare up now, her second one after she developed UC a year and a half ago after two month course of antibiotics for acne. She’s in her 4th week of the flare up, bloody stool 2-4 times a day), she’s on asacol (800mg) 4 a day, a mesalamine enema, vit. D (1000), fish oil 1 tbl, flax seed oil, heme iron pills (proferrin), VSL probiotic 6 tabs… but still having problems controlling it. She’s lactose intolerant, so not taking any dairy. Blood test for celiac disease came out negative. At the beginning of her illness,we switched to almost vegan diet, with good results, but later expanded it to include some animal protein, like eggs, see food and fish 2-3 times a week. She was free for over 7 months. (still on medication, though). Not sure what caused a flare up, maybe the bouillabaisse…

    Now we’re considering doing introductory phase Gaps or SCD. During this flare up she’s been having a diet of 1-2 rice crackers, quinoa, salad soups (with ground soaked walnuts) and vegetable soups., cabbage and veggie juice, as well as an egg and a little bit of fish…

    Any other supplements or enzymes we should add? All at once now or later in the diet? Discontinue all carbs from grains? It’s so difficult with a 15 year old!

    All the advice is very, very helpful and needed. Thank you for all your input.

    • bevApril 6, 2013 at 7:24 am #

      Hi Ana…

      I am happy to say that I follow NO regimen diet wise!! No GAPS, no SCD….I just have to avoid straight wheat, and I am okay! I am so so lucky, I know. Diet is a problem for a lot of UCers.

      I just take a good probiotic, L-glutamine, astaxanthin, and vitamin D ever day….forever!!

      Cheers
      :)

      • AnaApril 7, 2013 at 11:12 am #

        Bev,
        Good for you! What are the doses of the supplements you are taking?
        And THANK YOU for your prompt reply!!!

      • AnaApril 14, 2013 at 12:32 am #

        Hi Bev and Lane,
        My daughter just added ultimate flora probiotic (1 pill) a day and reduced VSL probiotic to 4. It’s her third day and in many respects she’s better, less blood or no blood in her stool. However, today she started to complain about her tummy hurting and spent most of afternoon lying down (2 hours after taking 1 capsule of Ultimate Flora probiotic, 50 billion). Have you experienced it? Any thoughts about it? Should we reduce VSL probiotics ? Or eliminate it altogether? VSL seems to be the favorite with doctors, since there were some studies done with it. It’s hard to say if VSL has done anything for us.

        Ana

        • bevApril 14, 2013 at 7:21 am #

          I have not had the stomach pain…I wonder if it’s even related at all to the probiotic. We are all different, and maybe her body is just trying to accept the good bacteria back?

          I have never taken the VSL, but that’s what doctors seem to recommend…makes me wonder if they get a kickback from that just like they do from prescription meds. Is your daughter taking both the VSL AND the Ultimate Flora probiotics? That seems like a lot. I don’t really know if one can take too much…but it may be a waste of $$$.

          All I know is that the ULTIMATE FLORA probiotic is all I ever needed and do need! I was a lot like your daughter…within days, there was a HUGE noticeable difference. All of my symptoms disappeared, however, it did not take ALL of the bleeding away, tho, so that’s when I added the good old L-glutamine to my regimen. Within two days…blood GONE!

          Bev
          :)

          • shelly in maineApril 14, 2013 at 8:19 am #

            my other comment is awaiting moderation…I know that VSL is the only one that has really been studied and there is actually real evidence it works especially in pouchitis.
            I’m pretty sure they are independent company because I had to find the prescription code for my Dr. He had originally recommended metagenics.
            just some added thoughts until the rest comes thru cause I added links!

          • AnaApril 14, 2013 at 4:51 pm #

            We reduced VSL now to two, + 1 Ultimate flora. She hasn’t had cramps today, so hopefully, it’s a good sign. She’s just so weak and I’m afraid yet to start givng her multivitamins now… I got this liquid Super Earth Multinutrient (whole food based multivitamin and mineral). However, it doesn’t have iron or vit. K ( I read people with UC are also vit. k deficient). Just don’t want to add too many new things at once.

            And thank you all for responding! It’s a big support for us!

          • AnaApril 14, 2013 at 5:06 pm #

            Hi Bev,
            Any brand of L-glutamin you recommend? Also any brand you recommend for astaxanthin?
            And Thank you again!

          • AnaApril 28, 2013 at 6:30 pm #

            I thought I would update you all on our progress.
            So my daughter started Ultimate Flora 1 cap, continued with VSL 2xa day, Lglutamine once A day, B vit, D (1000), two tsp of fish oil. She’s been doing it for a little over a week. She was still on 4 Asacol and a mesalamine enima. Although we saw some improvement, she still has lose stool with blood about 4 times a day, although not every time.
            Since she still has blood in her stool and is quite week, we decided to increase her meds to 6 Asacol. I know it’s not what you all seem to be doing but it’s very hard to see her that weak and suffering. It’s a little early to say but she might be better today. We are thinking of reducing Asacol to 4 again once and if she’s better. Of ourse, eventually, we want to discontinue it all together Well be adding astaxanthin this week.
            I don’t know if her diet has anything to do with it–she’s been on salad soups and green vegetable soups, with some fish or an egg, together with some green veg juicing. When we tried to add chicken broth or beef broth, her bleeding and cramps worsen considerably. We also added 1/2 banana, baked yams, and squash in soup, which seem to be ok. I also add avocado to soups. Before, during flare ups, she used to have otmeal or quinoa (and it was ok), but now we just don’t know. Any suggestions?

        • bevApril 14, 2013 at 5:58 pm #

          Ana,

          I take North Coast Natural fermented L-glutamine powder.

          I take the NOW brand of astaxanthin 4 mg capsules.

          Cheers

          • AnaApril 15, 2013 at 12:52 am #

            Hi Bev,

            Couldn’t find the brands you recommended in town or in stores i’m familiar with online– please let me know if you have any suggestion. I did find some similar ones from Jarrow.

            Thanks a lot!

        • bevApril 15, 2013 at 7:03 am #

          I think online is the only way to get North Coast Naturals in some parts of the US. There are probably many brands of astaxanthin. Perhaps try your local supplement store.

          :)

    • shelly in maineApril 14, 2013 at 4:13 am #

      hi Ana,
      Was your daughter tested for c-diff? Antibiotics deplete ALL bacteria good and bad, a perfect storm. Also, iron can be irritating. Unfortunately, as Bev has said, the meds can cause similar issues they are trying to “fix”.
      You can test negative to celiac, but still be intolerant to those foods as well as eggs, etc.

      http://pecanbread.com/p/how/stages.html…this should help. Be very careful with going to fast and especially the nut flours, etc.
      http://scdlifestyle.com/2011/03/what-to-do-when-the-scd-diet-isnt-working/

      I take vsl and mix it up with amounts and also the renew life. The probiotics are a must!

      Do lots of research and read everything about the meds, especially the side effects, so you know what to expect.

      Best, Shelly

      • AnaApril 14, 2013 at 4:57 pm #

        Hi Shelly,
        She tested negative for c-dif back when she was diagnosed. Her doctor wants to test her again (we’re hoping to do Fecal translplant either as part of a clinical study, or through a medical provider, or at home).

        Curiously, the side effect for asacol is diarrhea and blood. How do you know which is cased by what?! I wish we could get off it with just probiotics and other supplements.

        In terms of diet, she isn’t having any gluten, and no carbs from grains or legumes, especially during this flare-up now.

        Thank you for your thoughts and comment.

    • AmyJune 3, 2013 at 6:25 pm #

      be careful of iron pills. They made me flare terribly and 1 day i had forgotten to take them and surprise… no blood. This was a while back. I just wanted to mention it, as it was a problem for me and it took me a while to pin point that the iron pills were making me flare.

  11. bevApril 7, 2013 at 11:53 am #

    No problem Ana!

    If you read above on the original story postings, you will see everything that I am taking, along with the dosages.

    :)

  12. AnaApril 7, 2013 at 11:22 pm #

    OK, I see it. It seems that you were following box recommendations. We´ll try.
    So far, when we switched to chicken broth (two times in two days), it produced horrendous results overnight, with bloody stool 9 times a day today (from 3 yesterday).
    Thank you again,
    ana

    • shelly in maineApril 15, 2013 at 3:09 am #

      Ana,
      My response got lost, but the answer about asacol is you don’t know. If you don’t notice a change or symptoms get worse it could be the meds, dosage or perhaps the asacol. There are other meds in the asacol group you can read the new med reviews Adam has added.
      Also, there are other parents and young adults to contact on here.
      Gluten is very complicated and is hidden. Try and stay away from as much processed food as you can. Don’t forget to check out those websites and even purchase the. Breaking the Vicious Cycle book…the websites don’t explain everything.

      Keep in mind that UC is different for everyone and you will have to find what works for your daughter…it is not a one size fits all disease.

      You should keep a journal of Everything from foods to bm’s, etc.
      Knowledge is power…you are doing all the right things so keep it up! This is a great support community.
      Best, Shelly

  13. LaneApril 15, 2013 at 5:36 am #

    Hi Shelly,

    Maybe taking two probiotics at the same time is the problem. I take Ultimate Flora and Prebiotin but both are actually helping me. Everyone is different so not sure what is going on with your daughter. Like others have suggested, maybe keeping a journal of what she eats would help. If she has stomach problems after eating something you would know and eliminate that. I have had no problems since following the regimen that Bev uses. And I eat everything. All the symptoms I had for UC have disappeared. I have a 6 month check up soon with my GI doctor the end of April so it will be interesting to see what he says. Good Luck to you Shelly and hope things improve.

    • shelly in maineApril 15, 2013 at 10:03 am #

      hey Lane…ooops.it’s to Ana! Hopefully she will read yur input.
      Glad to hear you are doing well with your symptoms.
      Good luck at your followup.
      Shelly :-)

  14. AnaApril 15, 2013 at 6:17 pm #

    My daughter is doing better with cramps. Today we’ll add L Glutamine. The dose on the box (from Jarrow) says take 1/2 tsp (2g) mixed with some liquid on an empty stomach. Does it sound about right?

    • bevApril 15, 2013 at 9:49 pm #

      If that’s what the box says, then that is what you should do.

      The empty stomach is a must. It will work better that way!

      Bev
      :)

  15. AnaApril 28, 2013 at 9:42 pm #

    Ana Says:
    April 28, 2013 at 6:30 pm
    I thought I would update you all on our progress.
    So my daughter started Ultimate Flora 1 cap, continued with VSL 2xa day, Lglutamine once A day, B vit, D (1000), two tsp of fish oil. She’s been doing it for a little over a week. She was still on 4 Asacol and a mesalamine enima. Although we saw some improvement, she still has lose stool with blood about 4 times a day, although not every time.
    Since she still has blood in her stool and is quite week, we decided to increase her meds to 6 Asacol. I know it’s not what you all seem to be doing but it’s very hard to see her that weak and suffering. It’s a little early to say but she might be better today. We are thinking of reducing Asacol to 4 again once and if she’s better. Of ourse, eventually, we want to discontinue it all together Well be adding astaxanthin this week.
    I don’t know if her diet has anything to do with it–she’s been on salad soups and green vegetable soups, with some fish or an egg, together with some green veg juicing. When we tried to add chicken broth or beef broth, her bleeding and cramps worsen considerably. We also added 1/2 banana, baked yams, and squash in soup, which seem to be ok. I also add avocado to soups. Before, during flare ups, she used to have otmeal or quinoa (and it was ok), but now we just don’t know. Any suggestions?

  16. LaneApril 29, 2013 at 5:30 am #

    Dear Ana,

    It took me at least one to two months before I saw any results from the probiotics and other supplements I was taking. So you have to give it some time. I’ve been symptom free (no bleeding, etc.)for almost a year now. It will be one year in August. Everyone is different and when you start the regimen with supplements, it might take a couple of months to notice any improvement. I don’t eat any meat. I do eat fruits, vegetables and veggie burgers. I also drink lactose free milk with no problem.

    • AnaApril 30, 2013 at 12:59 am #

      Hi Lane,

      We still haven’t lost hope. Today was a better day, but still with quite a bit of blood but better overall state and just two bowel movements. I’m just wondering whether we should continue with the meds (asacol and mesalamine enema) until the bleeding stops? The questions is whether they will help the bleeding and whether one needs to keep increasing the dose and switching to more harmful drugs! You said you quit them all once you switched to probiotics, right? For how long had you been doing hydrocortisone enema prior to that? My daughter has 50cm of her descending colon affected, so I wonder if it might take her longer to heal…

      BTW she is tolerating probiotics well now. Bev says she takes them on an empty stomach, while on the box it says with food. We tried both and it seems that on the days when my daughter takes it on an empty stomach, she’s better.

      I looked up Prebiotin, and it llooks vere promising. In PubMed I found -a new study on gut microbiota (Nutritional protective mechanisms against gut inflammation☆
      Monica Viladomiua,b, Raquel Hontecillasa,b, Lijuan Yuanc, Pinyi Lua,b, Josep Bassaganya-Rieraa,b,⁎
      aNutritional Immunology and Molecular Medicine Laboratory, Virginia Bioinformatics Institute, Blacksburg, VA 24060, USA
      b Center for Modeling Immunity to Enteric Pathogens, Virginia Bioinformatics Institute, Virginia Tech, Blacksburg, VA 24060, USA
      c Department of Biomedical Sciences and Pathobiology, VA-MD Regional College of Veterinary Medicine, Virginia Tech, Blacksburg, VA 24061, USA. Received 3 September 2012; accepted 15 January 2013).
      According to the article, prebiotics and probiotics (as well as CLA) play major roles in reducing inflammation and promoting beneficial micro flora in the colon. However, their mechanisms differ and their combination is more effective. So, we’ll probably add Prebiotin as well…

      I also want to add a multivitamin but afraid that it can cause irritation and more bleeding.. What was your experience? Did you add it while you were healing, with bloody stools?

      And lastly, did you follow any special diet while you were healing?

      Thank you so much for your response! This site and the community have been a lot of help and provided me with very useful information!

      • LaneApril 30, 2013 at 9:58 am #

        Hi Ana,

        I follow a vegetarian diet. I don’t eat meat. I eat a lot of fruits and vegetables. Also, love the products made by Gardein and Amy’s. I have always taken a women’s vitamin which I buy at Trader Joe’s. I’ve been taking it for years. It’s the one for hair and nails and my nails are very strong, I think from this product. I take a fish oil pill, vitamin D, CoQ-10,Prebiotin, and that is it. I recently ran out of my Astaxanthin and L-Glutamine and so I’m going to see if I can get by without buying more. I have not noticed any change in my condition. I have a bowel movement everyday and it is a normal one with no bleeding. Now, again let me say this, everyone is different. My UC would come and go for years. I started taking supplements just last August and noticed a change in about 2 or 3 months. I read about Prebiotin. I liked the fact it was developed by a GI doctor from Johns Hopkins. I take it everyday and mix it with juice or put in on cereal. Again, what works for me may not work for another person. I think it’s a trial and error process. I wish you all the best, Ana, and yes, this site has been a lot of help for me.

  17. Graham from England
    Graham leeApril 30, 2013 at 5:15 am #

    Hi Lindsey and all,
    If you are looking for a natural solution then you could try real extra virgin olive oil. It works great for me and also for a growing number here. It has great anti inflammatory properties with oleocanthal and the fatty acids it contains. There are recent, constant research results showing that the fatty acids in Evoo reduce colon inflammation. Good luck!

    http://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/comment-page-1/#comments

    http://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/comment-page-2/#comment-125425

  18. AnaApril 30, 2013 at 11:56 pm #

    Thank you, Graham! The olive oil discussion is another interesting one. We’ve always been using organic extra virgin olive and I’ve been adding it to vegetable soups after they were made, so as not to heat it (perhaps not in such quantities, though). I wonder if it’s also beneficial taken in soups? If it gets absorbed in the small intestine, what’s the difference? ( it will be difficult to have my 15 year old take it by tablespoons.) She’s already taking a teaspoon of fish oil twice a day. Do you think we should switch to Evoo instead?

    Also, I thought 5 ml dosage x times a day you initially suggested, Graham, is not a tablespoon but a teaspoon. However, then you said it’s 3-4 tablespoons a day. Could you please clarify it for me?

    Lane, Is anybody familiar with Dr.Klein’s guide to healing colitis and Crohns (he’s a natural doctor)?
    It’s a very restrictive raw vegan diet. One of his ideas is that any processed oils are not recommended. Any opinions about that? We’re not really following it, allowing for fish and eggs but looking at my daughter who lost about 10 lb (since we cut out all grains and legumes for now) since the beginning of the flare-up in March 2013, I’m thinking that her diet during the flare perhaps is not sufficient. As a side note, she couldn’t tolerate neither chicken, nor a beef broths. So it’s just blended vegetable soups (for now leaving out crucif. vegetables out) with avocado, some papaya, a banana, a sweet potato, and an egg or some white fish (even salmon seemed to have made her stools worse and with more blood)

    And thanks again!

  19. Graham from England
    graham leeMay 1, 2013 at 3:40 am #

    Ana,
    I’m sorry if I said 5ml initially (early Evoo days), I have checked again and it is 10-15ml per dose. I would definately swap Evoo for fish oil or at least reduce it to assess the benefit. I took fish oil for a week or two and it tasted awful, if you have good Evoo I’m sure it will go down easier. I recomend you trying the oil 1st to make sure it has the qualities mentioned in my post. No shortcuts here, more gentle palletable oil is not as good as a fruity, bitter, peppery oil. Early harvest, well in date oil is a must as is the throat burn..
    I feel strongly that the dose should be taken on its own and not with or after food (you obviously can in addition to 3 per day). I have had both anecdotle and personal evidence that “with food” is not as good and of reduced benefit. The former could have been due to inferior oil but the pain relief aspect is certainly reduced and I can only conclude the other benefits may also be reduced. It has a long way to travel I guess, though the strange thing is that any discomfort I sometimes have disspears within 10-15 minutes of taking a dose.

    The shot glasses are handy for use away from home and you can even get 30ml medical dispensers with 5/10/15ml indicators.

    I don’t wish to inflict false hope but please do not under estimate the potential power of this solution, give it a proper go and I am sure you will take a big step forward, maybe a leap even..

    • AnaMay 2, 2013 at 10:20 pm #

      My daughter tried today 1 tsp of Trader Joe’s Spanish organic EVOO. Wasn’t as bad as she thought it would be. So we’ll try to increase the dosage more tomorrow.

    • AnaMay 5, 2013 at 1:30 am #

      Just an update:
      My daughter is up to three teaspoons a day of olive oil. So far so good. Better formed stools, 2-4 times a day with less blood. Added today 1 astaxanthin cap. She even wend to a dance today–hopefully, that won’t affect her adversely. We’ll be trying to increase EVOO a little more. I wonder if for her weight, she might be ok with smaller doses of olive oil?

      • Graham from England
        Graham leeMay 5, 2013 at 1:53 am #

        Ana,
        Encouraging news, we are all learning right now but we should not be frightened of consuming EVOO in this way, some Greeks consume 20 litres per year. Your daughter seems to be going in the right direction so you could stay on 5ml/teaspoon or quite reasonably 10ml per dose. I really admire you for what you are doing for your daughter and thank you for reporting back.

        • AnaMay 6, 2013 at 11:12 pm #

          We’re to almost three tablespoons a day and seeing good results.
          Thank you for your encouragement!

        • AnaMay 20, 2013 at 12:34 pm #

          Hi Graham and all,
          Just an update. My daughter is doing better. We’re slowly expanding her diet. She’s been taking three tablespoons of EVOO a day on an empty stomach and like I said earlier, the blood in her stool disappeared on the second day. (Our pediatrician thinks that it might be due to the oil not getting absorbed and coating the intestinal wall, and healing the ulcers.) However, her stools are still pretty loose (sometimes than others) 2-4 times a day. So I was also wondering if olive oil on an empty stomach can cause more frequent, loose, or less formed stools. (I recall that when my grandmother was constipated, she would take some oil on an empty stomach as a laxative, which always worked.) Any thoughts on that?
          Thank you,
          Ana

          • Graham from England
            GrahamMay 20, 2013 at 1:38 pm #

            Great news Ana..
            I had not heard it put quite like that before but your pediatrician makes a well informed judgement I’m sure. From what we can gather here (very early days) Evoo and most probably other oils travel a long way indeed. I may have posted this information on the other Evoo page but research proved that inflammation was reduced and or non existent where oleic acid (in Evoo) was present in the colon. It may not go all the way though, both myself and another UC’er (from Twitter) still has inflammation near the very end. In my case, an additional thickened anal canal, so I have decided to go with more fruit and vegetables, less meat.

            I am sure your theory is correct, like with your daughter, I would presume a softer stool is desirable and less of an irritant. It should also speed up digestive transit time which reduces the presence of poor bacteria, apparently. If mine are softer like this for a year and the (invisible) healing continues, I shall be happy.

            @realslimshakey

      • bevMay 5, 2013 at 12:02 pm #

        Such great news Ana!

        Keep going…don’t stop…things will get better and better…

        :)

        • AnaMay 5, 2013 at 12:12 pm #

          Thank you, Bev!

          We’ll keen working on It!

        • AnaJune 29, 2013 at 3:53 pm #

          Hi Bev,
          Are you familiar with Ultimae Flora Critical Colon Bifido Max (80 bln per cap. It has 14 strains of bacteria vs., I think 10, in Ultimate Flora?
          I guess I´m missing your comments…
          Ana

          • bevJune 29, 2013 at 4:26 pm #

            Yes, Ana…actually…you know what? I tries that one for about 5 days…and everything started rumbling down low. I told the clerk at the supplement store, and she said that the strains were different in it, and I guess for me, the good old 50 billion one is the magic bullet! She allowed me to return it and get my usual one…the 50 billion CRITICAL CARE one. (They are a great store to deal with and told me that RENEWLIFE, the maker of the probiotic, reimburses them in such cases as what happened to me).

            I figured ‘COLON’ (that makes sense for UC) and 80 billion instead of 50…more is better…but apparently not for me! The strains are different and I’m so happy to be back on my old standby…lol.

            Bev
            :)

          • bevJune 29, 2013 at 4:27 pm #

            Sorry…that was supposed to say I TRIED that one…not tries…

  20. AnaMay 2, 2013 at 1:10 am #

    Graham,
    Thank you for the reply. We’ll try to ease it into her diet and will let you know . The olive oil thread was most informative and hopefully it will also work in our case. Thanks a lot!

  21. AnaMay 2, 2013 at 1:25 am #

    Hi Lane,

    Prebiotics sound very promising. I just bought some form of it from Jarrow ( combination of 6 probiotics with inulin and FOS-FructoOligoSaccharides, 400 mg, per 1 g of powder), but just discovered that it has some trace dairy. Since my daughter is lactose intolerant and, we think, her flare up last year was provoked by the lactose tolerance test (12 oz of whole milk, feeling perfectly great before and bloody stools 10 times a day 40 hours later), I should probably return it. I was wondering if the prebiotic, prebiotin, you are taking is from this site http://www.prebiotin.com/about/? If so, do you take it in combination with probiotics and in what dosage?

    Thank you!

  22. LaneMay 2, 2013 at 7:53 am #

    Hi Ana,

    I am also lactose intolerant so I always buy lactose free milk. Also, my mother was also lactose intolerant too. Yes, that is the website I use. My dosage is just what is advised on the label. I only use 1/2 of the scoop that is included in the container. I noticed gas if I used a full scoop amount and have continued with this dosage (1/2 a scoop) I mix it with orange juice or cereal or whatever I am drinking, i.e. juice. I take Prebiotin everyday after I have taken my probiotic which is Ultimate Flora and I take that pill the first thing in the morning on an empty stomach. Jarrow is a good brand but I usually buy my Prebiotin on the website as I am happy with the results and won’t change to another brand. Dr. Jackson also sends emails with special offers on his product if you sign up on his website. I also look for specials in my local health food store (Sprouts) and they had a great sale on Prebiotin recently so I stocked up. It’s been almost a year for me and no signs of UC…very happy. Oh, I do use Extra Virgin Olive oil when I cook and think it does help too!

    • AnaMay 5, 2013 at 1:38 am #

      Hi Lane,
      We ordered prebiotin. When you say you take it in your juice after you take a probiotic, what’s the time interval? Do you take them in a row?
      Also, as for your diet, do you eat oatmeal? When you had your flare ups, did you have to modify your diet for that period? I’m really looking for ways now to expand her diet. As a vegetarian, do you eat eggs, fish, grains,and legumes?
      Thank you,
      Ana

      • LaneMay 5, 2013 at 3:55 pm #

        Hi Ana,

        I’m a teacher working in a school so I don’t have much time in the morning. Here’s my routine: I take the probiotic, Ultimate Flora the first thing when I get up around 5 or so in the AM on an empty stomach. I then wait and usually eat and drink something around 7 or so. I take the prebiotin every morning but it’s after I take the probiotic Like I said, I usually mix the Prebiotin powder (small scoop is included inside the container) with orange juice or oatmeal or dry cereal. Now, I did use a full scoop when I started Prebiotin but it was too much for me. The label says to use 1/2 a scoop so that’s what I did. I believe it will cause gas if you use too much. So far, I have not had any problem. I’ve cut out eggs on a regular basis but will have them occasionally. I don’t eat fish. I do eat bread but only whole wheat, usually gluten free. And I eat a lot of vegetables like broccoli, etc. I love the products made by a company called Gardein. I eat a lot of fruits and vegetables and no problems. The last time I had a flare up was almost a year ago and it was in August. I kept a diary of what I ate too. I have not had a flare up since that time. I just started watching what I ate and also changed to lactose free milk. I don’t eat any fried foods. I drink a lot of water. I do drink coffee in the AM but only one cup. I hope all works out for your daughter. I love Prebiotin and hope to stay on it a long time as it has helped me.

        • AnaMay 5, 2013 at 9:22 pm #

          Hi Lane,

          Thank you for your answer! It’s very helpful, especially because it’s similar to the diet we follow. Although UC cases are different, I do find many similarities. Also, it’s very important to know what works for others. By sharing, I believe we’re helping each other.

          You mentioned you have whole grains, (like wheat without gluten). How about brown rice, quinoa, etc.? Do you also have legumes, like beans and lentils? Mushrooms? I’m asking because before my daughter was able to handle all of the above high fiber foods with no problem but this time it’s been taking her much longer to come around. When she tried to have some dried pea soup during this flare-up, the results we’re not good. Hoping that later we’ll be able to reincorporate them. Today she had some oatmeal and so far doing all right. Were there or are there any foods that you associate with either flare-ups or discomfort or pre flare-up?
          Thanks again!

          • LaneMay 6, 2013 at 5:50 am #

            Hi Ana,

            I do eat white rice and I buy a veggie burger from Amy’s called Sonoma burger which contains quinoa. They are delicious and my daughter loves them too. I do eat beans but no lentils. I do not eat mushrooms but this is because I don’t like them. I eat oatmeal and to tell you the truth, I don’t have any foods that I associate with flare-ups, Ana. I eat just about everything but stick to a vegetarian diet. Again, no fried foods. I cook with vegetable oil and olive oil when I make the Amy’s veggie burger. I do eat a lot of bananas and blueberries. I make smoothies with them. Amy’s has a good line of products and I’ve been using them for years. Hope this helps,but again, everyone is different so what works for me may not work for another person. Oh, I eat hummus too which I have for lunch along with pita bread. I also eat peanut butter with no problems.

        • AnaMay 6, 2013 at 11:09 pm #

          Hi Lane,
          Thank you so much for all your dietary tips and insights. It might not be the recipe for all but surely gives me more information and perspective on how to proceed.
          We’re keeping our fingers crossed but we saw improvement from all the supplements we added, the last one being the olive oil, which we now increased to almost three tablespoons.
          Thank you all for the great discussion, tips, and support.

  23. MariaMay 2, 2013 at 5:29 pm #

    Hi guys, I just want to clarify, what is VSL?

    • MariaMay 2, 2013 at 5:44 pm #

      Also, I live in a remote area, no place at all for me to find any probiotics (or more specifically the Renew life Ultimate Flora brand) locally. Ive read somewhere that probiotics need to be kept refrigerated which makes it pretty much impossible for me to find any here (we have 2 drugstores, that’s it.. no refrigeration of probiotics from what I saw…). Does anybody happen to know if it would make a big difference in the probiotic if I were to order it online? Where I live, it takes ATLEAST 2 weeks for parcels to come in… Im dying to try out Bev’s regimen, but I haven’t been able to get my plan in place yet of places I should order the supplements from…

      • SharonMay 29, 2013 at 1:46 pm #

        I order my VSL#3 DS from my Target pharmacy and they keep it in a refrigerator in the pharmacy. My doctor writes a prescription specifically for the DS version because my insurance considers the VSL#3 to be a food supplement but the VSL#3DS as medically necessary so they pay for it.

        • AnaMay 30, 2013 at 11:29 am #

          Interesting! Never knew about it. My daughter has been taking VSL 3 but nobody mentioned VSL 3 DS. It seems to be a much higher dose. Sharon, how much are you taking? Have you been able to compare VSL 3 vs VSL 3 DS?

          • SharonMay 30, 2013 at 12:10 pm #

            The DS only comes in a powder version and has 900 billion bacteria per packet. DS stands for double strength so its the same 8 live strains as the VSL#3 just a stronger dose. I guess my insurance company thinks that makes a difference :) My script is written for 2 packets 2 times per day but once in remission you go down to 1-2 packets a day. Unfortunately I got lazy and quit taking it for about 6 months. I am determined to come off of Humira though so I am taking 2 packets a day now. I know Bev insists on taking the probiotics on an empty stomach but I can’t take the powder mixed with water (yuk) so I take mine in a shake of almond milk, frozen banana, and greek yogurt. I used to use Spiru-tein protein powder but ran out and didn’t use while in remission. I just bought more today so now that goes in too. BTW I also bought the L-glut and Astaxanthin supplements.

  24. LaneMay 2, 2013 at 6:25 pm #

    Hi Maria,

    I do know that some sites do ship Ultimate Flora in a container which keeps it cool. I’m not sure which sites they are, however. I was doing research and saw that some will do this. Not all of them, though. I’m fortunate to go to a local health store that keeps my Ultimate Flora cold. I think you would have to find out from customer service on various sites and maybe have to overnight it. You’d probably have to pay more in shipping but yes, it is best if you can buy the probiotic which is kept cold during shipping. Prebiotin which I use daily does not have to be kept cold, refrigerated and so far it is working for me. I take both a probiotic and a prebiotic. VSL is a probiotic and I’ve heard good things about it too.

  25. AnaMay 2, 2013 at 10:18 pm #

    Hi Maria,
    VSL comes in powder and in capsules. I get it in Costco. Although VSL needs to be refrigerated, it says on the box that it’ s ok if it’s not refrigerated for a week or so. VSL has been shown in studies to be effective in managing UC. As for Ultimate Flora, it says that for optimal results it needs to be refrigerated. So I think that it can withstand shipping, especially in a cool container.

  26. AnaMay 21, 2013 at 12:31 pm #

    Hi Graham,
    Thanks for your thoughts. Have you tried olive oil / fish oil enemas? They can probably take care of the lower end of the intestine. We were considering doing those but since the bleeding has stopped (thanks to your Evo in big part!), never tried them.

    In terms of diet, I really think it makes a difference for our daughter when she has consistent daily intake of green vegetables (right now mostly in soup forms, hoping to go back to salads, etc. soon)—different varieties of plants and grains provide different types of soluble and insoluble fiber to support the microbiota in the intestinal tract, which in turn supports the intestinal lining of the gut.

    You can read about it also in the recent article from the New York Times:

    http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-100-trillion-bacteria-that-make-up-your-microbiome.html?ref=magazine&_r=0

    • AmyJune 3, 2013 at 6:06 pm #

      Hi Ana,

      I was very sick with Pancolitis & Crohn’s colitis and my last colonoscopy determined it’s not Crohn’s but UC. I always had UC … from the time I was 17. I got very sick and It got so bad that the inflammation moved up to the terminal ileum and past that point and I had all the symptoms of a Crohn’s patient. mouth issues and e. nodosum (spelling) and just was super sick. I can’t take any immune suppressing meds, 1 because of my genetic makeup i’ll die & 2, my body is too sensitive and I tried 2 kinds of strong meds and by body refused them. I have to take a natural approach and have now since I was diagnosed with Crohn’s colitis in 2009. I have healed up most of my colon, terminal i., and small intestine. I cannot seem to get the last part of my large intestine to heal. This has got me super frustrated as I bleed a lotand it’s coming just from this 1 area that I can’t seem to get under control. I’ve spent years restricting myself and doing all that is necessary to heal, but now i’m in a stand still with this disease. What good is the rest of the healing, if there is continual inflammation that still effects my quality of life… this is how I feel. Also when I had my last colonscopy and determined UC and not CD, my GI doctor said that the cells within my anal canal had changed. it’s basically abnormal pre-cancerous cells on the epithelial cells (the 1st layer of tissue)… I believe the name of it is intra-anal epithelial neoplasia . My surgeon cauterized the abnormal cells, but I continue to have bleeding . Because oral meds don’t really help the lower end of the large intestine and there are minimal rectal options, I have reached a stand still and feel very discouraged. I kinda feel like I’m going to die, even with all the progress i’ve made.
      Where do I get the fish oil/olive oil enemas? Are there any other things I can try that are administered through that route to get this bleeding to stop? Thank you in advance :)

  27. Graham from England
    GrahamMay 21, 2013 at 1:01 pm #

    Hi Ana,

    Thanks to Dr Andrew Hart, I just tried it, learned from it and then told everyone!

    I keep wondering about the enemas, not sure where to start but I am sure the informstion is on here. RJW was trying this I believe. I have been on Asacol for 3 weeks and the blood has been away for 2 weeks! Although everything else was good, the blood as getting me down. I will add the enema suggestion to my UC strategy board under the yet to try section. I do let the suppositories have an Evoo swim first which must be helping too.

    I like your approach and I am now fruit and veg mad. Its spooky you posted the same link, I too placed it here yesterday on “surgery soon”. It looks a cracker even though I still havent read it properly, so much to read. I am sure this is where the answer is and I still cant believe my healthcare professionals have only mentioned diet in relation to a colonoscopy!

    I know I dont need to say this to you Ana but to anyone else and myself included, stay vigilant!

  28. AnaMay 28, 2013 at 5:56 pm #

    Hi Lane,
    just wondering how you are doing after dropping l-glut and astaxanthin. I hope you are well!

  29. LaneMay 29, 2013 at 6:27 am #

    Hi Ana,

    I dropped L=glut and astaxanthin for a short time because I was out of my supply. However, I’m back on them and everything is fine. Still no symptoms of UC. I also take Prebiotin everyday and it seems to work for me. I mix it with my cereal or orange juice. Everything is working and I thank you for your concern. Best wishes, Lane

    • AnaMay 30, 2013 at 11:47 am #

      Great! Glad to hear you are doing well!

      My daughter continues to be doing better with all the supplements but we know that she’s not in remission yet–still loose or very soft stools but no blood (she’s on 5 asacol and Rowasa, which we want to reduce but don’t know whether to start with the enemy or the pills))! Saw yesterday her GI, who thinks we’re letting her flare go on for too long. He’s a nice guy but I always leave his office depressed. Writes down the supplements but never really talks about anything other than your standard meds. He acknowledged at least that no blood is a good sign but wants to reevaluate in two months to see if she needs to add Uceris (a very new oral steroid preparation, locally absorbed, fast eliminated, so very limited side effects of steroids, which is good). I just think that only after adding all the supplements and EVOO, she stopped having bloody D and started improving (she actually flared up being on 4 asacol and Rowasa, and that even after adding 2 more asacol (later we reduced it by one) didn’t really do much ). So I think it’s a process and, like Bev says, we need to be patient and let the supplements work and the gut to heal and repopulate with more beneficial micro flora.

      • SharonMay 30, 2013 at 12:24 pm #

        I would personally suggest going off of the Rowasa first. For one thing, as a child,having to do an enema is much more invasive than taking a pill(OK really that’s true for adults too). I would think that psychologically, it would be a huge improvement to not have to do those anymore. Also, the enema only reaches so far into the colon. I have found that my disease is just out of reach for most of the medicine I try to apply topically. Depending on where her disease is located, the Rowasa may not be doing all that much for her anyway. My GI and I have agreed that enemas are no longer a part of my treatment plan for that very reason.

        ALso, until she is in full remission, I personally wouldn’t take her off of the Asacol. Add the supplements and keep working on her diet but if she needs the meds to attain full remission, then I would stay on them. When she comes out of the flare, I would stay on the supplements and probiotics but get her off of any maintenance dosages. I have had UC for 23 years and never stayed on meds for maintenance until this year that I have been on Humira. I think a lot of the chronic problems caused by the meds are from overuse during remission. Just my opinion.

  30. SharonMay 29, 2013 at 2:00 pm #

    Just read this super long thread and wanted to jump in. I have a great book called “What to Eat with IBD” that explains which fruits/grains/veggies hurt and which ones heal. I could never have tolerated whole grains in a flare but I can have oatmeal or oat bread. I love to scoop canned pumpkin into pancake mix and add an extra egg to make pumpkin pancakes. I also roast root veggies (peeled) with EVOO until very soft. I use parsnips, butternut squash, sweet potatoes, white potatoes. I also like to mash up avocado with a little lime juice and salt and have on white pita bread. When I am in a flare I have to be very careful to soothe my gut. Salad is by far the last thing I add back into my diet. I am not lactose intolerant but during a flare I can’t have straight milk. I switch to almond milk and now I don’t even like regular milk. The good news for me is that when I am in remission, I can eat whatever I want as long I go slow in the beginning.

    By the way, if you are in a bloody flare and increase your meds, the bloody stool would increase dramatically if the meds themselves are to blame. If you increased the Asacol and the blood and D decreased, the medicine is not causing the symptoms. I do not have the enzyme to break down the time released modifier in Lialda so I almost died before I learned this little lesson.

    • shelly in maineMay 29, 2013 at 4:13 pm #

      hi Sharon,
      We do have lots in common. (Well, except I am Med free part, but not anti meds) That too is one of my favorite books along with, The New Eating Right for a Bad Gut, Breaking the Vicious Cycle, Dede Cummings-Living With Crohn’s & Colitis, and of course, Adam’s book!

      • SharonMay 30, 2013 at 3:27 am #

        Believe it or not, I went 20 years without reading any books on UC or even considering my remission diet. I have to admit, I haven’t wanted to read Breaking the Vicious Cycle because I know it’s a diet I don’t want to follow. I will check out The New Eating Right book though.

        • shelly in maineMay 31, 2013 at 3:11 am #

          Sharon,
          It’s amazing to have the internet at our fingertips.
          I bought the SCD book to understand the concept behind it. I never thought I would have to follow it, but the longer I’ve been with UC, the more changes I’ve made…the more sensitive to foods. I also use the spirutein and the same vsl in my Smoothies! Direct from the book! I know spirutein has saved me over the years, but some people have issues with it. It’s just important to keep all the info in yur back pocket, as every Med has a limited life span and generally if you stop the tnf blocker you can’t go back on them.
          Food for thought! :-) Shelly

          • SharonMay 31, 2013 at 4:24 am #

            So true Shelly. I used to suffer with malnourishment during every flare, more likely to eat a doughnut than anything with nutrients. I am not sure if my UC is changing or if dealing with UC after 40 is the problem:)

        • shelly in maineMay 31, 2013 at 10:37 am #

          Hi Sharon,
          Over 40…not proving to be so great! Oh well…we battle on!

          • bevMay 31, 2013 at 10:48 am #

            LOL…

          • shelly in maineMay 31, 2013 at 11:11 am #

            i’m on my fifth year…I think it was Oprah that said the 40’s were great…B.S. it started with giving up my gallbladder at 40!! :-) guess I’ll save all the rest for my update! Or not!

          • shelly in maineMay 31, 2013 at 11:13 am #

            5th year of 40’s that is. :-) lifetime with UC:-)

          • bevMay 31, 2013 at 11:41 am #

            I remember that show…Oprah – Shmoprah…my best years healthwise are far in the past!!

            Oh, those twenties and thirties…how I long to have them back!

      • AnaMay 30, 2013 at 12:19 pm #

        I thought I mention that many of the books (I looked up New Eating Right…) are available on Google books where you can read some (often extensive) selections from them to give you an idea whether you want to purchase it.

  31. AnaMay 30, 2013 at 12:37 pm #

    Hi Sharon,
    Thank you for your suggestions (from VSL to medications). You confirmed what I’ve already been thinking.

  32. AmyJune 3, 2013 at 5:39 pm #

    Hi Lindsay – I haven’t read the comments that the others have left because there’s just too many. If I repeat something that was already mentioned, I apologize in advance.
    First of all I just want to say I really feel for you with having to care for your children in addition to yourself. Some days I can barely manage to get enough strength to take care of my own personl responsibilities, like cooking, cleaning, grocery shopping, mowing my law ect. I commend you for your ability to juggle the care of your family, yourself and all the little things that come with just living life when you’re not exactly feeling 100% (or maybe not even 60% on some days).

    People with UC and Crohn’s really should be supplementing because of the lack of nutrients that we absorb due to a number of factors that people with a digestive disease face – scar tissue can prevent proper absorption, inflammation, a limited/restricted diet that doesn’t allow you to consuming certain foods that have the needed nutrition, surgery and removal of parts of the intestines will effect this too, transit time from the time you stick the food into your mouth and how quickly it moves through your digestive system will also determine how much nutrients you were able to get from that food.
    I just read something today that was pretty shocking about Americans that don’t have any major health issues. A high %.. I know it’s over 50%, but i don’t remember what the percentage was, is nutrient deficient because of the Standard American Diet (aka S.A.D). It’s terrible and it’s only getting worse. I can go on and say a lot about this topic, but that’s a whole other thread posting. So think about that for a second… If healthy people have nutrient deficiencies, people with a digestive illness must really have some problems.
    This is what I have NEEDED to supplement. Calcium for sure because I can’t handle lactose. I would take calcium even if you can have dairy, woman especially should because of the chances of weakening bones. I have osteoporosis from prednisone use. I’m only 34.
    with Calcium take D3 (i was deficient in this). MOst people are, especially people who live in a location that doesn’t get a lot of sunny days. I am in upstate NY and unfortunately it’s overcast the majority of the time, so i don’t get the required amount.
    If you supplement calcium and d3 you should def supplement VITAMIN K2 – It moves the calcium to the proper areas in your body- bones and teeth and removes calcium from areas where it shouldn’t be- arteries and soft tissues.
    Plus D3 is good for reducing inflammation, boosting immune system, the secretion and regulation of insulin, heart and blood pressure regulation, muscle strength, brain activity & the big one is cancer reduction.
    IRON – If you bleed a lot, at some point you may need to supplement iron. Iron supplements can be harsh on the stomach and intestines (it causes me to flare terribly) so I have to get it in my body a different route and get iron infusions. It’s a pain in the a** because I have to get 5-7 20 min infusions every other day for 2 weeks, rather than 2 quick iron injections. Most people can handle getting the injection method and that amount of iron in 1 dose then go back the next day and get another large dose and that’s it. My body responded negatively because it’s so annoyingly sensitive. If you feel extremely fatigued all the time, dizzy upon standing and out of breath when exerting yourself, get your iron levels tested to determine a deficiency. ONLY take iron if it’s necessary – it can be dangerous otherwise.
    PROBIOTICS – are almost essential because that’s our issue – an imbalanced gut flora. We want to balance the bad and good bacteria and it’s through probiotics that we are able to achieve this. Eating cultured yogurt is a great way to get good bacteria and another way is through fermenting (see GAPS diet). VSL#3 is a prescription probiotic that worked for me in powder form which was discontinued. Now VSL#3 comes in capsule form… this doesn’t work for me…. go figure lol
    I just want to go back for a second to The GAPS diet. I have to say is a no brainer if you understand the diet. I’m a huge fan of the diet and the woman who created it. You may want to look into her, Natasha Campbell-McBride. The woman is brilliant ad her theory is logical and effective.. and doesn’t break your budget either. She takes the things that anyone can buy at the local market and prepares them in a way that makes them healing which allows you to get the most out of your foods. (see my blog and listen to the audio that explains GAPS, her main focus is on the importance of our gut health in relation to our overall health. It’s a really good recording. I highly suggest you listen to it.
    omega-3 (not 6) fatty acids reduce the inflammatory process and have many other benefits. Unless you eat a lot of high quality fish, you probably have to supplement.
    Vitamin E & C – immune health and healing properties
    iodine – believe it or not a LOT of people are deficient. Iodine content of foods depends on the mineral content of the soil where the food was grown. Nuff said about that one. We all know US soil is depleted of minerals. Also bromine is in a lot of foods and products we use which interferes with iodine absorption. There’s ways to test your levels of both iodine and bromine. 1 problem if you lack iodine – Thyroid problems.
    VITAMIN B12 – it is so important for energy.
    Stay away from boxed foods, artificial sweetners (use Stevia if you want to sweeten your food or drinks), caffeine, carbonated drinks, gluten.

    Before supplementing , get a full blood screen to test what you need and what you dont. It’s easy to get done and will tell you a lot.

    Hope this was helpful to you. Best of luck to you :)
    Amy

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